Dealing with life despite disability

Hi everyone,

It’s been a while since I’ve written a blog piece, and tonight I felt inspired to write, so here I am.

Tonight, I’m going to talk more about myself, my life and how I’m dealing with everyone.

When I first started this blog, I wrote about my life with Ehlers-Danlos syndrome. How it was growing up with it and everything that accompanies having a chronic illness.

A lot has changed since then. I’m older, I’ve been diagnosed with more illnesses such as Fibro and Chronic Fatigue Syndrome, just to mention a few. But the illnesses aren’t what I want to talk about this time.

This time, I want to talk about life, how I’ve been handling it, the good and the bad, what I’ve been doing meanwhile, and the hopes and dreams I cherish for the future.

First, I have to say, that for a very, very long time, I think a part of me was just numb; like a part of me didn’t care about anything anymore, because I thought; ‘what’s the point?’ That’s changed now. Even though my health has gotten worse as has my pain, in some way, I feel more alive now than I ever have.

I took me a while to realize that being a young, disabled person unable to work is NOT what defines me. I am what defines me. My actions towards myself and others define me. It’s a bit of a process working that out, and sometimes I still struggle with the concept, but I understand it a lot better than I did several years ago.

This past year has opened my eyes to a lot of things. It has shown me that, just because I cannot work, does not mean I cannot achieve anything. So, I thought about it and what I wanted to achieve, and when it came down to it, I realized I just wanted to touch people’s hearts and become a better person myself in every way I can.

And, there are a LOT of ways to move people. You can move them through art, writing, videos, conversations (about anything and everything). So, that’s where I started.

I created my very own Facebook support group for the chronically ill and disabled, which has grown so much in such a short time, it still amazes me. Even though there have been ups and downs while managing this group, I do know that I’ve connected with and touched people’s hearts, and that they have done the same to me. They helped me realize how strong all of us are, and when we don’t feel so strong, that there is always someone there to help lift you back up.

I think I’ve done some good with this group, and hope to continue to do so and to help and move people the same way they help and move me.

I’ve also decided that, just because I can’t work, does not mean I can’t study. I’m not able to go to a school physically, but I can study official courses on my own, and when the time comes, do the exams for them and hopefully pass.

The first course I chose was Practical Psychology. Not only because it is a subject of interest of mine, but also because I think it will help me understand my friends and members in my group better, so I can talk to them and help them better than I can now, once I’m finished with the course.

The second course is French, which (hopefully) will be part of a series of courses I need to take that will help me obtain my High School diploma. Just because I can’t work, does not mean I can’t have the joy of accomplishing this.

I also spend a lot of time on my various hobbies, all of which really help a lot on the bad days. I’ll do my hobbies on my good days as well, but when I’m having a bad day, they are even more essential aids in lifting my spirits back up. Sometimes you can’t see the light at the end of the tunnel, but it is always there, you just have to reach a little harder to see it at certain times.

I am also trying to be a better wife to my husband. My husband is older and wiser than me, but I was very young when we got married, and honestly, did not understand the concept of marriage as much as I thought I did. There’s a lot to learn when you’re in a marriage. Compromise, communication, working together, for example. I’m starting to better myself in these areas, but I still have some ways to go, but that’s alright, I’ll get there sooner rather than later. Because my husband is amazing, and I really would do anything for him, and want to show him that we are indeed in this together, all the way. I’m taking it step by step, but I think I’ve progressed quite a bit since we said our ‘I Do’s’.

And lastly, I have my hopes and dreams for the future; which are, for the most part, pretty down to earth.

I hope that I will continue to be able to help people, not only in my group, but outside of it as well.

I hope I keep the amazing friends I’ve made these past few years for the rest of my life, and that we will be there for each other always.

I hope that my husband and I will have a long and happy life together, despite our struggles with the medical issues and such, and that even long after we leave this earth, our souls will always be intertwined. Carl’s the Angel I’ve wished for since I was about 6 or 7 (it’s a Buffy, the vampire reference, feel free to ask me about it if you don’t understand) and I couldn’t have gotten a better one.

Lastly, I basically have one dream. I’ve had this dream for a very long time, and it might never come true, but without dreams we’re nowhere really.

The dream is this: I want to write a book someday and publish it, and spread my words across the world. I know that I’ve touched various people with my writing pieces, and that already means much more than I can express, and if that’s all I ever get, that’s ok too. But still, this is a dream and I’ve had it since I was a child. So maybe, one day, it might come true. Either way, I’ll keep dreaming.

That was basically all I wanted to say for now. Thank you for reading, and I hope you’ll join me for my next piece as well.

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How People In Pain Feel About Doctors

I was waiting to update my Blog until I finished my PTSD article, however something has been bothering me for a while now, especially after a particular bad experience of my own, and I just felt I had to write about it.

How People With Illnesses Feel About Doctors.

People with illnesses or chronic pain that can’t be explained will recognize what I’m talking about; we’ve all been through this.

Basically, I want to talk about how people like us feel when doctors dismiss us or call us crazy because they can’t figure out exactly what’s wrong with us.

I know part of what’s wrong with me; I was diagnosed with Ehlers-Danlos Syndrome, Hypermobility type and Fibromyalgia three years ago. However, as of late, my pain and symptoms have gotten a lot worse, and suddenly doctors I’ve never seen in my life want to fight my Fibro diagnoses and say it isn’t there, or that it’s in my head. I was forced to go to a psychiatrist as part of a ‘process’, and after asking me a few question about my illness and my past, which I told was filled with bullying, he determined that I’m psychotic, my pain is in my head and I am of low intelligence.

Where was the intensive examination process someone usually undergoes before being classed as ‘psychotic’? I was simply asked a few questions by an assistant who looked like she was too young to be out of school. Where was the IQ test to determine my level of intelligence? In school, I was always classed in the higher part of my class level, with the ‘smarter’ kids, which is not to say I’m classing myself as someone of high intelligence and smarter than everyone else, but I sure as hell have never been classed as someone with very low intelligence. Where did he get the right to put that in my file? I can and will disprove his accusations towards both my psyche and intelligence, and will see justice done, but meanwhile, I’m left feeling like I was battered by a baseball bat and stomped down into the ground.

Doctors think if they see us once for a few minutes and ask us a few questions, that they know everything there is to know about us. Even if we have been diagnosed with a real illness, they still dismiss us because they didn’t know that illness even existed or because there’s no physical evidence upon you to show that you are ill.

And not to mention the hell we go through to even get a diagnoses to start with. Some of us have to fight for years or decades to find someone who will believe us when we say we’re in pain, and who will look further than the obvious to find what is wrong with us. Meanwhile, we are insulted and beaten time and time again by soulless humans who call themselves doctors. Doctors who go through the motions and seemingly feel no compassion whatsoever towards people like us. I wonder what they would feel if they had to go through what we go through day after day? I bet they wouldn’t feel so good about themselves anymore, realizing they put us through the same they are now experiencing.

People with invisible illnesses, chronic pain, they get labeled as insane, drug addicts or liars by so many doctors simply because it’s something they can’t see, something they can’t fight against. Instead of just telling us they don’t know what’s wrong or they don’t know how to treat our disease, they beat us down, telling us it’s in our head, we’re making things out to be worse than they are for attention, or we’re just out to seek drugs. They don’t give a damn about our feelings or what they put us through, all they care about is not ‘losing face’. They don’t want to come across as ‘stupid’ or unknowledgeable, so they spout of crap of knowing all about it, while really they don’t know a damn thing, or they dismiss us, making us feel as if there’s something wrong with us, as if we really are ‘crazy’.

Doctors think they can say and do whatever they want and get away with it. They think they’re gods, invincible. They don’t know how moronic that train of thought is, and how, sooner or later, they, or someone they love, will end up where we are.

Initially, I spent 11 years searching for answers, trying to figure out what was wrong with my body – because, no matter what anyone else said, I know my own body and I knew that what I was feeling was real and not in my head. At first, they seemed to pay attention, doing a few tests to find out what was wrong, but when they couldn’t find anything specific, that’s when the true hell began. I was called a lying attention seeker, I was an addict seeking drugs or it was all in my head and I needed to be committed so they could ‘fix’ me. I wonder what some of those doctors would think now, if I went back to them and showed them my EDS diagnoses. I could say; ‘Here you go, that’s what’s always been wrong with you. And because you didn’t know, you condemned me to a decade of misery and pain. I hope you feel proud of yourselves.’ I wonder what they’d say if that would happen.

And you’d think being diagnosed would be the beginning of a better time, but you don’t imagine that there will still be doctors who don’t believe you. Doctors who think the disease doesn’t even exist, simply because they have no knowledge about it. Doctors who don’t care, even if they believe in the diagnoses, because there’s no ‘known treatment’, so why bother trying to find a way to help you then?

Do doctors even realize that their treatment of people has led to suicide? People who could have been helped, people who wanted to be helped, but gave up because no one would listen. It’s sad to think about. I know there’s been times that I nearly gave up because of something a doctor said or did to me. They say words can’t hurt, but they do, and when you’re a chronic pain patient, and you deal with all that stress, the pain only increases, which only increases the despair you feel each time a door is slammed shut in your face.

Doctors call themselves healers. They take an oath that they’ll help anyone no matter what – what a lie that oath has become! I’ve met very little doctors who still do as their oath says. Nowadays, a lot of doctors are just in it for the money, not because they want to help people. In my experience, most doctors don’t want to help, they want your money and they don’t want to be bothered with your problems, unless your problems can get their name in medical journals.

Even when you find a doctor who tries to help you, sometimes tries for years, eventually even they seem to loose interest and start to dismiss you, which I feel is beginning to happen to me. I call my GP and before he would’ve tried to come and help me, and now he says: ‘Well, that’s just your disease, there’s nothing I can do.’ When I used to call my main specialist, I would always  get to speak to her, now the secretary refuses to patch me through to her. If I go to the ER, they tell me to go see a specialist and send me home, refusing to help me, even when I’m crying because I’m in such tremendous pain.

Where does this vicious cycle end? When will chronic pain patients get the attention they deserve? When they have the money to buy it? I know if I were rich and famous, I’d get a lot more attention and much better care than I do now. Why is it so hard for regular people to get that help we need and deserve?

How many more people need to die before they realize that chronic pain conditions are serious and deadly? How many? A hundred? A thousand? A million? The way they treat us is not right, it goes against the Hippocratic Oath, it goes against every natural law there is! Is it too much to ask for compassion from those so-called ‘healers’? Will they ever listen to us, or will we continue to fight this endless fight for centuries to come?

I hope someday soon, something will change. Things cannot continue as they have, too many innocents suffer and die for it…

Depression and Self Esteem

Depression is a serious illness. Anyone can become depressed. It doesn’t matter who you are, how wealthy your are or how good your life is; depression can strike anyone at anytime. It’s like a silent ghost. Depression does not discriminate. It’s a terrible disease that people all over the world suffer from.

What exactly is depression?

Well, there’s not an easy answer to this question. Depression is a lot of things all rolled into one. For example, people who are depressed often have a very low self esteem and feel they are worthless and helpless.

Symptoms of depression can include:

  • A depressed mood during the days, often more intense in the mornings.
  • Fatigue or loss of energy
  • As said before, a feeling of worthlessness, and also guilt
  • Indecision and lack of concentration
  • Insomnia (an inability to sleep) or hypersomnia (excessive sleeping)
  • Diminished interest or pleasure in any activities
  • Recurring thoughts of death and/or suicidal thoughts
  • A sense of restlessness, or being slowed down
  • Significant weight loss or weight gain
  • Headaches
  • Muscle pains
  • Withdrawing from people
  • Becoming dependent on alcohol or sedatives to get through the day

So you see, not only is depression a mental illness, it can be thought of as a physical illness as well, as it can cause a multitude of problems that affects you physically.

Why do people get depressed?

Well, there’s not an easy answer to that question, is there? Some people become depressed because their life utterly and completely sucks. People with chronic pain are at a higher risk of becoming depressed, as daily pain can do that to you. Then there are people who seemingly have it all, yet still get depressed. As I said, depression doesn’t discriminate, anyone can get depressed. If you ask someone why they are depressed, they might have an answer for you or they might not. Sometimes people who suffer from depression don’t even know why they are depressed.

The stigma around mental illnesses

A lot of people in the world suffer from mental illness, including depression. However, there is still a whole stigma surrounding these issues. For some reason, people find it easier to show support to someone who has cancer, than to someone who has a mental illness.

People with a mental illness often face discrimination, loss of friendship, isolation, exclusion from activities, difficulties in finding and keeping a job, not finding help and facing a slow recovery, if they recover.

Self esteem with depression

Often, a low self esteem accompanies those who are depressed. Some people think so little of themselves, even going as far as to believe that they are a disgusting burden. So, it’s not strange that this is often accompanied by depression. I believe that one of the first steps toward healing from depression, is working on your self esteem.

What exactly are the characteristics of low self esteem? (Off course, not every symptom applies to everyone.)

  • Social withdrawal
  • Anxiety and emotional turmoil
  • Lack of social skills and self confidence. Depression and/or bouts of sadness
  • Less social conformity
  • Eating disorders
  • Harming oneself
  • Inability to accept compliments
  • An inability to be fair to yourself
  • Focusing on the negative parts of life
  • Exaggerated concern over what you imagine people are thinking of you
  • Self neglect
  • Treating yourself badly, but being good to other people
  • Worrying whether or not you’ve treated someone badly
  • Reluctance to take on challenges
  • Reluctance to put yourself first
  • Reluctance to trust your own opinion
  • Expecting little out of life for yourself

So, if you recognize yourself in many of these characteristics, it’s probably safe to assume you have low self esteem and you should try and boost it up, because low self esteem often leads to full on depression.

What causes low self esteem?

Low self esteem is based on the experiences you have in life, and the message you receive about who you are. A lot of things can cause low self esteem, here’s just a few examples:

  • Systematic punishment, neglect and/or abuse
  • Excessive criticism
  • Being judged because of your physical appearance
  • Failing to meet parental standards
  • Failing to meet peer-group standards
  • Being on the receiving end of other people’s stress or distress
  • Belonging to a family or a social group that other people are prejudiced towards
  • An absence of praise, warmth, affection or interest
  • Being the odd one out, at home or at school
  • Being systematically bullied by others
  • A low financial and social position
  • Unemployment
  • Betrayal in a relationship
  • Ill health and trauma
  • Negative experiences

How to boost your self esteem?

There’s a lot of things you can do to boost your self esteem, you just have to find the right things for you.

For example, you can do a positive ‘note’ system around your house and work place. You take several pieces of paper and write down positive phrases (ex. You are beautiful, you are kind, you are smart,….etc.) and hang them in places you go to a lot (ex. The bathroom mirror, your computer, your bedroom, your work place desk,… etc.). Read these phrases every day, repeat them over and over to yourself until you believe them.

Dispose of negative influences in your life. If you have friends who get down on you for being depressed, or who don’t believe that you are ill, then those are not good friends to have, especially when you’re in a state of depression. So, remove all bad elements from your life (yes, they may include friends and family, but sometimes it’s for the best), and surround yourself with positive, loving people who support you and care about you.

Keep a journal and write in it everyday, even if you don’t feel like it (then write that). Write about what you’re feeling and thinking, write about the events of the day, both bad and good. Writing is very therapeutic, as it releases some of the tension and stress you feel from keeping it all bottled up inside.

You can also keep a ‘grateful’ book. Each day, write down one thing you’re grateful for that day. When you feel like you can’t go on, read your grateful book and see there are still things worth living for.

I also keep a quote book, as well as a song lyrics book. If I feel down or am riddled with anxiety, I like to look at these books. The quote book is filled with positive quotes and even a few poems. I always have it near me ready to look into it if I feel I need to. These quotes can be very empowering. As for the song book, well, music is an important part of life, and there are so many songs that offer strength and comfort, so I write down the lyrics of these songs so I can read them at any time.

Accept your strengths and weaknesses. Everyone has their own strengths and weaknesses and knows what they are. However, people with low self esteem and/or depression tend to only focus on their weaknesses, not their strengths. The key is to embrace both. They’re part of who you are, and that’s not a bad thing. I acknowledge both my strengths and weaknesses, and I don’t dwell on them. I accept them for what they are, and if I can, I sometimes work on those weaknesses, but I don’t focus on them. Accept yourself for who you are.

Accept and embrace failure. Failure is a big part of life. There’s not a single person in the world who hasn’t failed at one thing or another. The key is not to falter when you fail. If at first you don’t succeed, try again. Don’t beat yourself up over a failure, it’s a perfectly natural thing. What you do when you fail, that defines you. Will you let it take you down, or will you let it strengthen you? Failure isn’t a bad thing, not at all, it’s a human thing, embrace it and learn from it, let it make you stronger.

Appreciate the little things. A lot of people have become so complacent nowadays, and hold no appreciation for the little things (such as food, water, a bed, a shower, etc.). Appreciate them for all they are, because there are people in this world who don’t have the luxury some of us have. Appreciate everything you have to the fullest. Stop and smell the roses sometimes.

Begin each day on a positive note. If it’s a cup of coffee, a funny facebook page or a TV show, begin your day with something that gives you joy. It sets a positive vibe for the rest of the day.

Discover and seek out things you are passionate about. Some people would say a hobby is just that, a hobby. But it’s so much more; it’s passion, it’s a distraction, it’s something to make you happy. So find whatever it is that you like to do, feel passionate about and makes you happy (it can off course be several things). If you feel like you’re going under, work on one of these things that make you passionate, distract yourself from the negative emotions and fill yourself with good ones. And above all, be proud of what you do, because it is something to be proud of.

Working on your self esteem is the first step in healing yourself of your depression. Off course your depression won’t just go away by boosting your self esteem. It’s still a daily, ongoing struggle, and you do have to fight very hard to come out as the victor.

Depression is such an ugly disease, and it can ruin your life if you let it. The trick is to keep working through it, keep battling those inner demons everyday. And someday, those demons inside, those voices in your head that tell you this world isn’t worth living in, they’ll quiet down and you will find a sense of peace. But again, only if you’re willing to work on it.

Just keep reminding yourself of the good things in your life and look around for the beauty in the world. It might not be as obvious as it once was, but that beauty is still there, you just have to look hard enough.

Yes, depression can destroy someone. But remember, it can be beat! Think of it as a monster. Monsters can be fought against, monsters can be defeated, and so can depression. Be strong and remind yourself that this fight is worth fighting.

So, that is just about what I wanted to say about depression and self esteem for now. I hope this is helpful.

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

Interviews Part 3

Hi, so this is the third part of my interview series. After this, I’ll take a short break from them to write a piece on Depression and Self esteem, which was requested of me. After that, I’ll continue with the interviews. I hope these interviews help someone. Thank you.


This is the interview of Dianne Charney 

How old were you when your medical problems first started?

I was 39 years old.

What medical problems / conditions do you have?

COPD (chronic pulmonary obstructive disease), IBS (irritable bowel syndrome), THORACIS AORTIC ANUERYISM 8.5 CM, AFIB (arterial fibrillation, sometimes my heart beats irregular)

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I got COPD from smoking. Always had bronchitis and it is hereditary from dad. I got IBS from a young age, just didn’t know it back then. Thoracis is also hereditary, did have surgery to fix it.

How were you diagnosed and by what kind of doctor?

In hospital with pneumonia, diagnosed by lung doctor.

How long did it take for you to be diagnosed properly?

It took two years.

What was going through your mind when you received your diagnoses?

That I would have to be on oxygen 24/7 and have problems walking distances.

Is there a cure or treatment for your illness? If so, what is it?

There is no cure.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Not pain in the usual way, but I panic when I cannot breathe.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I cannot exercise or walk long distances.

What are your worst symptoms? How do you deal with them?

Not being able to breath some days. I can’t move so sit in chairs with oxygen. I look forward to some pretty good days, though I tire very easily.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Will remain the same, as long as I take my medication and quit smoking.

How do you feel about having all these medical problems?

I have an invisible disability, but still feel blessed. There is at least some whose symptoms are worse than mine. I haven’t a greater support system and invisible disabilities groups are always there to listen.

What is the worst thing about having these medical problems?

I love to dance and enjoy and education and working, and cannot do either. Hate that I have no energy.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I cannot work, I am on SSDI.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes, I used to be able to clean the house, dance and run errands, and now with low energy I can only do little things.

Are you able to have a daily routine? Can you describe your daily routine?

I don’t have a daily routine. It depends on how I feel every morning.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

I can no longer clean the house.

Do you have any tricks to make your life easier in dealing with your medical problems?

No, I just take each day as it comes.

Have your medical problems had an impact on your financial life?

Yes, I made good money when I was working. SSDI does not pay a lot of money.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I love reading a good book.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, because I have already been through the beginning of this.

How do you explain your condition to healthy people?

I explain that I have a hard time breathing, and to please be patient with me.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

If you really wanted to breathe, you could set your mind to it.

Do you feel as if people don’t understand you? If yes, can you explain why?

I feel most people understand.

Are you afraid to be around people? If so, can you explain why?

No, only when I have a panic attack.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

No, I still feel life is worth living.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes, I was always healthy and feel that this has slowed me down and has made me weary from always being so tired.

Do you have a message for others in similar situations that may help them?

Yes, never start smoking, take one day at a time and live life to the fullest.

And lastly, how has this illness / disability affected your relationship with people?

Some people have walked away but my true friends stood by me.


This is the interview of Jaimee See 

How old were you when your medical problems first started?

I was about 5 when my mom noticed I’d cry all the time and say my belly hurt and they thought I just needed to move my bowels.

What medical problems / conditions do you have?

I have been diagnosed with Crohns disease at age 21 , Gerd at age 20 ,map dot fingerprint dystrophy at 28.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I was born with my issues.

How were you diagnosed and by what kind of doctor?

When I was pregnant they said I had Gerd at age 20. Crohns after pregnancy, though in high school I was very ill and they said I was just a nervous teenager. Map dot fingerprint at age 28; an eye condition.

How long did it take for you to be diagnosed properly?

Gerd right away, Crohns many many years of multiple things wrong and not knowing what really caused them, map dot finger print dystrophy age 28 but I didn’t know it was happening.

What was going through your mind when you received your diagnoses?

I knew it before the Dr’s did with my crohns so I was not surprised. Gerd didn’t really effect me neither did map dot.

Is there a cure or treatment for your illness? If so, what is it?

No cure, just treatments which I’ve tried many of. I just had 55 cm of intestine removed sept 12th.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Pain is high and normal for me. My Dr currently won’t give me many pain meds because he says that they can kill people like me with my condition as then we don’t know some thing is wrong or that the pain is to bad and we die in our sleep. So I deal with the pain or buy them from friends who have left over meds or when in do get them I stretch them or take my husband’s if he gets any, my mom’s if she has them. I have a mother of joint pain that I believe to be fibro or RA (rheumatoid arthritis) but have not been diagnosed.

Are you able to exercise or do sports to help with the pain? If so, what helps?

They say I can but I’m so fatigued and sore, so I don’t.

What are your worst symptoms? How do you deal with them?

Joint pain, cramping, diarrhoea, back pain, joints cracking and popping. I take pain meds if I can drink lots of water I also drink store bought juice drinks but can’t eat most fruits or vegetables they hurt my stomach and make me sick.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Worse, I just had a resection surgery sept 12th but this could be the beginning of a long road or I could go into remission.

How do you feel about having all these medical problems?

It makes me stronger but I hate missing things in my life or living like this. I understand my disease at times. I can’t eat this or that at times ugh annoying.

What is the worst thing about having these medical problems?

Living with them and letting this control me.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

No, I work as a hotel manager about 50-70 hours a week.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes, it affects me in how and what I do. But it has not changed me as I have always been sick.

Are you able to have a daily routine? Can you describe your daily routine?

Somewhat. I get up 2 hours before I leave for work to shower and get coffee in me and give me time to get sick before I leave for work if  I need to. Then as soon as I get to work an hour early I give me time to get sick again before working. I don’t eat until I’ve been up 5 -7 hours or I will be very sick. When I can take my humira every 2 weeks, I can live more normally and eat better and also my joints feel good but I always feel as though I have a cold and I hate that.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Not really but my husband is great he also trips up and down steps when my joints are flared.

Do you have any tricks to make your life easier in dealing with your medical problems?

No tricks. I wish I had some.

Have your medical problems had an impact on your financial life?

Yes, I have so many medical bills it’s outrageous. Insurance doesn’t cover enough.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I repeat just keep swimming and know that I do with 24/7 whatever it takes 24/7.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, my son is being diagnosed and I want to inspire him.

How do you explain your condition to healthy people?

I don’t, or if I have to I tell them it like having the flu 24/7, achy joints, diarrhea and being sore.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

Don’t worry, you’ll be fine. I hate that, I feel it’s disrespectful.

Do you feel as if people don’t understand you? If yes, can you explain why?

yes, they think it’s going to go away or that it’s not a disease.

Are you afraid to be around people? If so, can you explain why?

No.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, right before surgery I had a year that was not good and I wanted to give up.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

No, I was very broke for a few years. I lived without stuff we needed to get through such as water and electricity and heat and was nearly homeless.

Do you have a message for others in similar situations that may help them?

Just keep pushing through. We have what we have for a reason.

And lastly, how has this illness / disability affected your relationship with people?

I don’t think it has.


This is the interview of K!

How old were you when your medical problems first started / what medical problems are they?

I was 26 age with ptsd, anxiety, pmsd, peri-menopause. 30 years of age when diagnosed with arthritis and 37 years of age with fibromalgia. Teen years diagnosed with spine disorders.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

Spine deformities I was born with, ptsd and anxiety due to different traumatic events in my life, peri menopause and arthritis are hereditary and pmsd and fibro I have no idea.

How were you diagnosed and by what kind of doctor?

Gp, chiropractor, gyno, rheumatologist.

How long did it take for you to be diagnosed properly?

Spinal deformities a couple years, ptsd and anxiety by a psychatrist and a psychologist first visit, pmsd and peri menopause a month, arthritis 2 months and fibro 2 years.

What was going through your mind when you received your diagnoses?

I accepted the ptsd and anxiety. I’ve been through allot of stuff in my life. I was accepting of the arthritis and perimenopause and pmsd being hereditary. Fibro I wasn’t accepting of, I ate healthy 90% of the time active and exercised still trying to figure where it came from.

Is there a cure or treatment for your illness? If so, what is it?

I use the chiropractor for pain relief. See the gynaecologist for birth control pills to stop the periods but I still have break through bleeding. Rheumatologist for more pain and diet and activity management. Currently not treating anxiety and ptsd, I feel I have it under control.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

I experience mild to moderate pain if I follow my pain management plan, and if I don’t, it gets sever to the point where I go to the ER for steroids. A day doesn’t pass where I am pain free. Mainly I have it in my shoulders, neck lower back, hips, right knee but I have felt it in both feet legs, elbow, left hand feet ribs and touching makes it worse. I had episodes where I feel like I have the flu; this is arthritis, fibro and spine deformity related. Perimenopause causes random night sweats and hot flashes . Pmsd causes extreme mood swings, severe cramping, nausea, heavy bleeding but the pill works amazing to control all this.

Are you able to exercise or do sports to help with the pain? If so, what helps?

No sports. I gave up running and weight lifting because it made the pain worse. I do walk, stay active, and do range of motion exercises. I stay active cause sitting brings on stiffness and stiffness means pain but omega3 is amazing for morning stiffness.

What are your worst symptoms? How do you deal with them?

I just had my worse symptoms this past summer. So much pain I couldn’t walk, then so much pain in my arm I couldn’t use it. Steroids helped and now I follow my Drs advise. I feel that I didn’t and that led to my severe flairs.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I was told arthritis is progressive, fibro just has different levels and peri meno pause leads to menopause which will take away the pmsd.

How do you feel about having all these medical problems?

I accept that I have them, but I don’t let it control my life. I self talk I may have these medical problems but I will come out on top every day and I picture myself on top of it. My faith gets me through too.

What is the worst thing about having these medical problems?

Having limited mobility and not being able to do the exercises I enjoyed doing. Dealing with pain and exhaustion every day and you don’t know the levels of it.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I am working, but my boss is just happy if I show up and wait on customers. I work for a privately owned local business. I know nobody else would hire me since I’m a “liability” now.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

My house is allot less cleaner and lifting is out of the question, I need help with grocery shopping if my sons are home to eat too. Driving is limited to local only. Laundry my mom does, the deal is she brings her over too.

Are you able to have a daily routine? Can you describe your daily routine?

Routine helps. Work day: up at 9, out of bed between 9thirty and 10am. Birth control pill followed by 1300 mg of tylenol arthritis. I sit for 30 minutes before I make meals for the day and breakfast includes protein powder, cranberry and probotic supplement, vitamin d and b12, omega 3s. Teeth brushed, 15min walk and range of motion exercises, sit for 20 minutes, shower, sit for 30 minutes as it exhausts me. Afternoon, if I have to work I start between 3 and 4 and wont do anything else for the day. Work day ends at 10pm. If I don’t work, 1 thing of housework or errands. Advil 400mg liquid gel at 6, then flexril at bedtime, 5 mg for sleep without pain. I usually fall asleep between 12am and 1am. Through out my day I never sit for more than 1 hour. As for work its continuously on my feet, rarely can I sit down.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Laundry, big grocery shopping trips. I can’t lift anything over 10 pounds and find lifting brings on pain so I avoid heavy lifting.

Do you have any tricks to make your life easier in dealing with your medical problems?

A healthy diet, keeping moving, and following your pain treatment plan no matter how you feel. Supplements are a miracle with no side effects.

Have your medical problems had an impact on your financial life?

Not yet.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I pray and read. I’ve been called a bookworm. I walk and listen to music.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I haven’t yet but would like to be if I can.

How do you explain your condition to healthy people?

I tried and I give up. They don’t get it. I don’t expect them too, unless they have it too they won’t understand.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

Three things I hate to hear: You’re too young for that. You look good. Feel better.

Do you feel as if people don’t understand you? If yes, can you explain why?

I never bothered with what other people felt about me. And having these diseases, I feel even more strongly about that.

Are you afraid to be around people? If so, can you explain why?

Due to my ptsd I cant be near anyone who is around 300 pounds, bald and has a goatee. It reminds me of my husband and I either try to get away or freeze up.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

When I had these 2 sever flairs this past summer I told my oldest son (he’s 19) that I cant do this anymore. He said; ‘Mama I love you and you cant give up. You have us.’, referring to my other son. I never had that thought again.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

No, surviving rapes and domestic violence is worse than all these health problems combined.

Do you have a message for others in similar situations that may help them?

I am a Christian so I do have to say this; God brought me to this and god will bring me through this. Religion aside you have to control whatever illnesses you may have. If not, it will control you. And don’t be afraid to move, it seriously helps, I feel better moving.

And lastly, how has this illness / disability affected your relationship with people?

The only people that matter is my family, mom and my sons. My sister has fibro too, which we don’t understand how we both got it. It has to be genetic but anyhow, and my BFF and they all understand so thankful for that

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

Interviews Part 2

So, this is the second part of my interview saga, meaning three more interviews 🙂 I must say this is a very interesting experience and I’m very glad I’m doing this.


This is the interview of Tammy Jeanne Friedrich:

How old were you when your medical problems first started?

I was 14. I had Juvenile rhuematoid Arthritis at the age of 37, diagnosed with fibromyalgia, now they think at age 41 it may be MS.

What medical problems / conditions do you have?

Fibromylagia, possibly MS

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I had Mono for 6 months and then the issues started showing.

How were you diagnosed and by what kind of doctor?

Neurologist and family doctor.

How long did it take for you to be diagnosed properly?

3 years and still counting.

What was going through your mind when you received your diagnoses?

Frustration, fear, concern, worry and helplessness.

Is there a cure or treatment for your illness? If so, what is it?

No.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Daily pain and then episodes of extreme pain.

Are you able to exercise or do sports to help with the pain? If so, what helps?

When I am not extremely flared up, I can do a little bit of walking. And I love to swim. Swimming helps

What are your worst symptoms? How do you deal with them?

Shooting pain, it feels like electrical shock. I lay down and relax or work through it. I don’t have much of a choice.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Doctors are still unsure.

How do you feel about having all these medical problems?

I am a survivor no matter what. So I face it head on and head held high.

What is the worst thing about having these medical problems?

Pain, confusion and lack of energy to do the things I want to do.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

It caused me to have to change careers for a sit down job.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

it has drastically changed my social life as I have no energy, and my home life as its difficult to find someone to be in a relationship with due to the fact many days I don’t want to do anything except stay at home.

Are you able to have a daily routine? Can you describe your daily routine?

I have to choose what I have the strength to do in the day. Instead of how most people decide to clean their whole house and cook, I may only be able to cook and clean one room of my house.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Laundry and grocery shopping. I don’t have the strength to carry things up my stairs. I live on the 2nd floor.

Do you have any tricks to make your life easier in dealing with your medical problems?

I have learned that I have to relax and take it one day at a time.

Have your medical problems had an impact on your financial life?

No, luckily I have excellent insurance and my job has me on fmla so my career is secure.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

Doing puzzles, listening to music to relax and watching a good movie.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, I am a fighter and have helped others remain strong.

How do you explain your condition to healthy people?

That I may look healthy, but suffer everyday with a brain fog, slurred speech at times, extreme pain and a feeling that I am being shocked and that I’m always tired. I explain to them how most people can do a bunch of things in one day, but I have to pick and choose because if I overdo it, I will pay for it for the next couple of days.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

I was told by a Dr that it was all in my head. And I have been told that I am just lazy.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, my friends and family; I have been able to explain to them and they witness the suffering I deal with daily and at times have seen me walk with a cane due to lack of coordination and stability.

Are you afraid to be around people? If so, can you explain why?

No, I am not afraid to be around others. I have come to terms that this is me and my life. If others judge that is due to ignorance, so I try to educate others.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, I have said to myself that if this is life then why is it worth living? Since then I have grown and accepted it and feel that I can conquer anything, no matter how difficult.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes, knowing that there is no cure I have had to come to terms with it and accept it for what it is, and to keep being happy as I am blessed to be here and there are always others worse off than myself.

Do you have a message for others in similar situations that may help them?

Be strong and reach out to others experiencing the same thing. Strength comes with numbers and support from others that understand my illness.

And lastly, how has this illness / disability affected your relationship with people?

Yes, it has dramatically changed my relationship with individuals that do not understand it because they are so ready to judge or choose not to bother with me stating I’m no fun and don’t want to do anything. But it has also allowed me to realize who my true friends are.


This is the interview of Debbie Atwell Emery:

How old were you when your medical problems first started?

I was 47.

What medical problems / conditions do you have?

Fibro and Polyarthalga.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I am not sure if it came about when a good friend was in an accident and died 3 times or some personal problems or could have been genetic.

How were you diagnosed and by what kind of doctor?

First came the fibro; I was seeing a neurologist that could not make up his mind, so I went to a rheumatologist who confirmed fibro, then a year later the polyarthalga .

How long did it take for you to be diagnosed properly?

1 year to 1 1/2 years.

What was going through your mind when you received your diagnoses?

What did I have and what was going to happen to me? Would I end up in a wheelchair? Very scary.

Is there a cure or treatment for your illness? If so, what is it?

No cure. They say to exercise, but it makes me hurt even more to do that.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Yes. Some days it’s like that dull headache that you feel, then forget about, then hurts when you think about it. Other days it hurts so bad that even the hard pain pills don’t even touch it. Hurts to walk; my muscles feel like I was at the gym and overdid it big time. I also get stabbing in my body, some feel like needles and others feel like a 2 inch wide knife. Just moving any limb hurts all the time, just different kinds of pain on any given day.

Are you able to exercise or do sports to help with the pain? If so, what helps?

No, it makes it hurt worse. But they say I should. Would love to see them have this and do everything they say I should.

What are your worst symptoms? How do you deal with them?

When the weather changes; makes my whole body hurt. Cold is even worse. I stay in bed or couch try no to move any part of my body. Take pain meds to put my self to sleep.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

They seem to be getting worse. I have my good day and bad days.

How do you feel about having all these medical problems?

I hate it. I hate the fact that everything I used to love I have given up. I used to ride my own motorcycle, belong to ABATE of Iowa, woodworking. It has taken everything away from me.

What is the worst thing about having these medical problems?

Read my previous answer.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

No, I still work. Yes, it makes it harder. By trade I am a painter at a University so very busy.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Same as the question as to how I feel about this. Iut I also missed my grandson 1 St birthday because of pain.

Are you able to have a daily routine? Can you describe your daily routine?

Yes. I get up at 5 am, get ready for work. At work by 6 am. Work till 3 PM. Take my son to work. I come home and let the dogs out. I get the back into the house and crash. My hubby wakes me up when he gets home, but I don’t leave the house too much.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Not everyday, but most days my hubby helps me if I ask. He cooks, does laundry, cleans washes dishes, what ever.

Do you have any tricks to make your life easier in dealing with your medical problems?

Finding something relaxing, like fishing.

Have your medical problems had an impact on your financial life?

Yes, very much so.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

Fishing relaxes me.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I personally don’t have very many friends here that I hang out with, I work and come home. I try to give comfort to those on invisible disabilities site.

How do you explain your condition to healthy people?

I tell them what I go through.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

I’m just getting old and to deal with it. Wah wah wah. I wanted to knock him out.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, they think that what I am going through is nothing but old age aches and pains. Or that I am just looking for sympathy.

Are you afraid to be around people? If so, can you explain why?

Not really. If I don’t know them I will have a panic attack.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes I have thought about suicide many times.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

No. I have been in abusive relationships one after another and had to teach my self how to look for the right person.

Do you have a message for others in similar situations that may help them?

Don’t let others get you down. Try to keep your stress levels down and love your self. It may not get better and this is your life now, but the only person that can affect you is you.

And lastly, how has this illness / disability affected your relationship with people?

This thing has brought my husband and I closer together. My kids ask how I am and when they are around they help me. My mother and my sister and her husband understand and I can talk to them. My sister had her spinal cord bent in half, she was going into surgery for her back and she was dying and no one knew it until they opened her up and saw her cord. She had all the same kinds of pains that I have so she and my brother in law understand me.


This interview is done by someone who wished to stay anynymous:

How old were you when your medical problems first started?

T2diabetes at around 43 years of age; remainder at 50 years of age.

What medical problems / conditions do you have?

T2diabetes (controlled); arthritis (in one limb/area); partial paralysis of right face; trigeminal neuralgia; double vision; trigeminal trophic syndrome

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

2diabetes – developed, no family history of it. Arthritis – accident at work. Partial paralysis/loss of feeling of right face (brain tumor removal). Trigeminal neuralgia (brain tumor removal). Double vision (brain tumor removal). Trigeminal trophic syndrome (tentative diagnosis at this point) (brain tumor removal).

How were you diagnosed and by what kind of doctor?

T2diabetes – GP. Arthritis – Ortho Surgeon who did the surgeries to fix the shattered/fractured bones. Brain tumor – neurologist. Partial paralysis/loss of feeling of right face – neuro specialist. Trigeminal neuralgia – ENT who referred me to a neuro specialist who confirmed it. Double vision – Neuro-Ophthalmologist. Trigeminal trophic syndrome (tentative diagnosis at this point) – general consensus of several doctors in different fields (dermatologist, ENT, facial surgeon)

How long did it take for you to be diagnosed properly?

T2diabetes – accidental diagnosis during normal exam. Arthritis – about 6 months after the fall; I started hurting and then was diagnosed almost immediately. Brain tumor – accidentally found during tests (MRI/CAT scans) conducted after the fall at work. Partial paralysis/loss of feeling of right face – knew about it from self-diagnosis, “officially” documented about two weeks ago (note, it had not caused issues really until recently so, didn’t push for diagnosis). Double vision – knew about it immediately after brain surgeries, “pushed” for being referred when it didn’t clear up within 6 months (sometimes the nerves that control the eye muscles will “heal” within the first 6 months). Trigeminal neuralgia – thought that was what it was but didn’t push on it until the ulceration of the nose didn’t heal (trigeminal trophic syndrome?) and the constant pain got steadily intolerable so, would say about 1.5 years. Trigeminal trophic syndrome – no ‘official’ diagnosis yet and there isn’t any way to test for it nor heal it…it is fairly rare so there isn’t much research, etc. on it either.

What was going through your mind when you received your diagnoses?

Basically…”oh shit”, and keep on going forward and do the necessary research to make sure I was informed.

Is there a cure or treatment for your illness? If so, what is it?

T2Diabetes – no cure, management through diet and medication. Arthritis – no cure and NSAIDs for pain. Double vision – surgeries to lengthen or shorten the appropriate muscles and prism glasses, may never be totally “cured”. Partial paralysis/loss of feeling on right face – no cure/no treatment except possibly time (cranial nerve damage can heal however it may take many, many years). Brain tumor – surgery and yearly scans. Trigeminal neuralgia – no cure, various types of medications which may or may not control the pain, etc., not ‘triggering’ the symptoms (hard to do because chewing, talking, breeze blowing on face, getting teeth cleaned, etc. are just some of the triggers). Trigeminal trophic syndrome – no cure, no medications, very rare disease.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Arthritis affects the joint/area of damage and it is more constant during cold/wet weather and can flare with much use of the limb (ankle/leg). Trigeminal neuralgia – constant burning/tingling sensation (think of your foot waking up after “falling asleep” then multiply that feeling by 6…and that is the feeling off meds, multiply by 3 and that is with meds currently trying) with sporadic “electric” shocks (like hitting your funny bone x 3 plus someone pinching and twisting at the same time and a “needle” jabbing). Sporadic electric shocks come out of nowhere; there is absolutely no warning of when they will come so you can’t prepare for them.

Are you able to exercise or do sports to help with the pain? If so, what helps?

At this point, I am still unable to do much exercise and definitely no sports.

What are your worst symptoms? How do you deal with them?

At this time, the sporadic electrical shocks are more painful than anything else. There are some days that it all flares (arthritis, electrical shocks, more burning/tingling of face) at the same time and it can be rather intolerable. I take what meds I have and make sure that they don’t cause issues with my work (sedation, fogginess, etc.) and “push” through it…hopefully without being “not nice” and cranky in the process.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Depending on what it is, they can get much worse or can stabilize.

How do you feel about having all these medical problems?

PISSED at times however I am most certainly blessed by God because many miracles have happened in the last two years in relation to the timing of things and the medical issues/problems. Several of my doctors and therapists have called me a “walking miracle”

What is the worst thing about having these medical problems?

At this point in time, I have lost my independence because I can’t drive due to the vision issues and, working through the meds for the trigeminal neuralgia (side effects of the meds, if I have them as the dose increases, need to stabilize).

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I am back at work. Does it make work harder for me…well, let’s just say I had to file a disability discrimination suit and leave it at that.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

My life has changed tremendously since the brain tumor removal and the residual medical issues from it. As I said before, my independence is lost due to not being able to drive and I have had to move in with my Mother so I can pay the medical bills and also be able to put money away for the future.

Are you able to have a daily routine? Can you describe your daily routine?

M-F is basically get up and get ready for work (including grabbing a cuppa coffee); ride to work with friend; work through the day; come home; eat dinner; chill for a bit and go to bed early. Saturday is clean house; wash clothes and errands; if the stores aren’t open then on Sunday. Sunday is church and errands. It used to be that Mom would want me to go grocery shopping once a month on a Saturday or Sunday with her (3-4 different LARGE stores) and that STILL exhausts me after working a full week so, she has pretty much stopped expecting me to go with her.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Not really anymore. I did earlier in this medical ordeal.

Do you have any tricks to make your life easier in dealing with your medical problems?

Shear strong will and stubbornness that it is NOT going to beat me…and that I will NOT be limited by it. The last on the list of the “conquer it list” is the driving and the remaining surgeries to reconstruct my nose (skin grafts, etc.).

Have your medical problems had an impact on your financial life?

Yes. I have had to move in with my Mom to be able to pay the monthly payments, etc. to hospital/doctors, etc. and to be able to put away for the future (retirement in 15 years or so).

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

Until I get more stable on my feet and my independence back, I have “lost” photography. I read, watch movies. I plan to pull out the crocheting to finish a blanket for my son this winter and am thinking about putting together an article or something like it (book draft?) about my medical experiences and the miraculous things that happened in the hopes to be an inspiration to others in similar situations.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I believe I may have helped a couple of folks to sort through things when they were diagnosed with brain tumors…and I have shared my story with people (healthy and not so healthy) and have been told that it was an inspiration to them.

How do you explain your condition to healthy people?

I’ve given up trying for the most part. If I do try to explain it, I try to use something that they are familiar with already, i.e. the feeling of your foot waking up from sleep and multiplying it by 6, etc.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

That I was faking (I wasn’t as ill as what the Doctors and I thought…because I didn’t “look” sick…it was all a front on my part to hide the pain and instability of walking, etc. when I came back to work) and that I fell down the stairs intentionally to defraud the company I work for.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, I don’t think my management understands me; however, even before the medical issues…I was a square peg in a round hole so to speak, i.e. didn’t conform to what others thought to be “normal”.

Are you afraid to be around people? If so, can you explain why?

Yes and no. I wouldn’t say afraid…just would rather be by myself than to put up with the drama, etc.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, I have wanted to give up several times although not to the point of thinking about suicide. Something within me or outside of me (God) always rears up and pushes forward though.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Again, yes and no. There have been several significant things happen throughout my life (major ones like abuse of several types, rape, working 2-3 jobs to support my child and myself, nasty custodial issues, sickly child, etc.) and hurdles to overcome…maybe they prepared me for the illness/disability to come later in my life? As a side note, I have had more total surgeries and hospital stays in the last two years than I have had over the last almost 50 years.

Do you have a message for others in similar situations that may help them?

Don’t let it get to you…keep on pushing forward. There is a reason for you to be here and a reason for what you are going through which only God knows. I have told my child before that pain is the way God tells us we are alive and that we have a purpose on this earth to fulfil.

And lastly, how has this illness / disability affected your relationship with people?

I have pretty much been a loner before with “some social tendencies” outside of work. I am now even more of a loner and would be extremely happy to not have to deal with the work drama, etc. I am really not tolerant of stupidity, immoral actions and ethics, ignorance (and I don’t mean uneducated, I mean educated and IGNORANT. People who don’t have empathy or concern for others) any more (of course, this could also be influenced by my age and growth as a person?). I have always had many “friendly acquaintances” with minimal “trust with my life” friends and now I tend to have even fewer “friendly acquaintances” and the “trust with my life” friends have not decreased…although, they haven’t grown in number either. I can count about 5 friends that fall in that category (and I am not counting my child either)…and those I have known anywhere from about 42 years to 15 years.


Stay tuned for more interviews to come.

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Interviews Part 1

So, you all know I’ve been planning to do a series of interviews with all kinds of disabled people / people with illnesses. I had a lot of volunteers, and since the interview itself is long, I’ll post 3 of them per blog every other day or so. And I figured if I felt comfortable asking these questions of other people, I should answer them myself as well. So I basically interviewed myself, lol.


So this first interview is answered by myself, Lieselot Mauroo:

How old were you when your medical problems first started?

I was about 10 years old.

What medical problems / conditions do you have?

Ehlers-Danlos Syndrome (it’s a connective tissue disorder), hypermobility type. Fibromyalgia (not officially confirmed yet), arthritis (localized to my hands for now), debilitating migraines, unidentified stomach problems, insomnia / fatigue.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I was born with the EDS, and the rest are most likely symptoms developed by the EDS over time.

How were you diagnosed and by what kind of doctor?

My rheumatologist figured out the problem was with my connective tissue, she send me to a geneticist who then officially diagnosed me with EDS.

How long did it take for you to be diagnosed properly?

Since the problems began around age 10, and I was only diagnosed at age 21, it took 11 years to get a proper diagnoses, which is ridiculously long in my opinion.

What was going through your mind when you received your diagnoses?

I was thinking how good it was to finally have a doctor believe you and give you a real diagnoses. I was happy because I thought being diagnosed meant I could get cured. Then the doctor told me there was no cure for this disease, there’s not even a proper treatment for it, and with that all my hopes of ever getting better were shattered. I was dismayed, heartbroken, I cried for hours.

Is there a cure or treatment for your illness? If so, what is it?

There is no known cure or even a treatment plan, it’s mostly pain management, and even that doesn’t help much.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

I experience pain every day. Pain in my right shoulder, my neck, my head, my knees, my legs, my back, basically there’s pain everywhere. Sometimes it’s a sharp, stabbing pain, as if someone stabbing me with a knife over and over again and then twisting it around in the wound to give it that extra bit of pain. Sometimes it’s a dull, constant throbbing pain. It varies.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I can’t exercise at all, even walking hurts, basically every movement hurts, so sport is out of the question. Maybe being in the water would help a little, but I’ve yet to test out that theory.

What are your worst symptoms? How do you deal with them?

Well, that’s hard to say, I’d say all of them. But the worst is probably my right shoulder, because that’s the one area where I never get any relief, the pain is always there.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I’ve heard of people with EDS who have little problems, and who’s symptoms are at a stable point. I’m not one of those people, unfortunately. My symptoms have gotten a lot worse in the past year, and it’s my belief (as well as my doctor’s), that it will continue to progress, and I just have to learn to accept it and adapt as it goes along.

How do you feel about having all these medical problems?

I would be lying if I said I wasn’t angry about it, because I am. I’m young and I’m supposed to be healthy and taking the world by storm, like young people do. Instead I feel old and worn out, and that makes me angry, because it’s not fair. But I’ve mostly come to accept it for what it is, there’s no use in constantly crying over it, it’d do me no good. So I cope as best as I can.

What is the worst thing about having these medical problems?

Being sick and in pain so often, plain and simple, that’s the worst part. I have more bad days than good, unfortunately. I wish it wasn’t so, but it is, nothing to do about it.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I cannot work. Not only am I in constant pain, but I’m sick so often that working really is impossible for me. It’s def. the EDS that’s preventing me from working.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

This pain’s been here since I was a kid, so I’ve gotten used to it mostly. I’d say it’s changed some in the last year, changed the way I do certain things. It’s a gradual change as the disease gets worse, I’d say.

Are you able to have a daily routine? Can you describe your daily routine?

No, I don’t have a daily routine, that’s not possible for me. I do have a system in place to try and put some structure in my life, but ultimately the way my day goes depends on how I’m feeling that day.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Yes. Like, I have a high chair for when I do the dishes, because sometimes standing even for a little while can be very difficult. Sometimes I need help during dinner cutting my meat, because my shoulder is hurting too much. I need help taking a shower or a bath, because I can’t do it on my own, those kinds of things.

Do you have any tricks to make your life easier in dealing with your medical problems?

I suppose so. The high chair for doing dishes is one of those ‘tricks’ to make it easier for me. I write a lot down so I don’t forget it. But there’s not really a lot of tricks that make it much easier for me.

Have your medical problems had an impact on your financial life?

I suppose so, it certainly would be different if I was healthy. Remember, doctor visits, ER visits, medications, they all cost money that a healthy person doesn’t have to spend. Off course I’m lucky living here in Belgium and having a good health care system, I think it’d be very different if I lived somewhere else, like in the US.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I have quite a few hobbies that keep me busy and distracted from the pain. I draw (only if my hands / shoulder allow), I do crossword puzzles, I play Guild Wars 2, I write (a blog, stories, poems, anything really), and I make fan music videos. Those are all great comforts to me during bad days.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I like to think so, yes. I try to help people with my Disability Blog, I try to help my friends in my support groups when I can. I like to think some people find comfort in that, or maybe even inspiration.

How do you explain your condition to healthy people?

I don’t, not really. I say it’s a connective tissue disorder, causes problems with joint and muscles and basically everything. I say my joints are hypermobile, but usually they don’t understand it at all, so then I show them one of my ‘party tricks’, like twisting my arm all the way around, that shuts them up pretty fast. I’m not really supposed to do that, but I do find their faces amusing when I do it.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

That I’m faking it to get attention, or that I’m crazy.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, I do feel as if a lot of people don’t understand me, especially healthy people. And how can they? How can a healthy person understand someone who’s in pain every day? They can’t, not until they experience it themselves. I’m lucky to have a husband who understands me, he’s my rock.

Are you afraid to be around people? If so, can you explain why?

Not at all, no. I don’t really like big crowds, but I’m not afraid of being around people. I like being around people every once in a while, and sometimes I just want peace and quiet.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, I have, but it didn’t really have anything to do with my illness. I was a teenager who was constantly bullied in school, sometimes even physically, and sometimes even threatened. I was a scared kid who didn’t see a way out, who didn’t realize that things do get better. Maybe not in the way you expect, but things to get better eventually. I haven’t felt this way since then, I mean I’ve felt lousy and down, but I’ve never again felt like I just wanted to give up, because I know I’m a fighter and I can get through the rough stuff.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

That’s a tough question, I want to say yes, but I also want to say no. Part of me still thinks surviving school was the hardest thing I’ve ever had to do, but as my illness progresses, another part of me feels that this is the hardest thing I’ve ever had to overcome. So I have mixed feelings about this.

Do you have a message for others in similar situations that may help them?

No matter how bad it gets, never forget that you’re a warrior and you’re fighting against something that’s trying to beat you down, but you can’t let it win. Even if the pain gets worse and the illness progresses, you can’t let it win. It can take your body, don’t let it take your spirit.

And lastly, how has this illness / disability affected your relationship with people?

I’ve lost friends because of this illness, but I’ve gotten an insight in people I didn’t have before. And I know who the important people are now, the people who support me and love me no matter what. At least now I know who my true friends and loved ones are. It’s hard to keep relationships while battling chronic pain, but the relationships you do keep just get stronger because of it, the relationships that weren’t the best to begin with, they dwindle down and die out.


This is the interview of Aubrey Snyder.

How old were you when your medical problems first started?

I was 15

What medical problems / conditions do you have?

I have gerd, scoliosis, anxiety, depression, PTSD, and I have had constant nausea for roughly a year that has yet to be diagnosed.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I don’t yet know what caused my problems.

How were you diagnosed and by what kind of doctor?

I have not been diagnosed yet, but I’m fairly certain my GI specialist came from heaven.

How long did it take for you to be diagnosed properly?

What was going through your mind when you received your diagnoses?

Is there a cure or treatment for your illness? If so, what is it?

Answer to above three questions: I have not been diagnosed yet.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Yes, I have a fair amount of chest and stomach pain from excessive bloating in my stomach.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I am unable to exercise because of my constant nausea. Exercise aggravates it to the point where I have to lie around for the rest of the day.

What are your worst symptoms? How do you deal with them?

My worst symptom is nausea. I have narrowed my diet to fruits, veggies, chicken and nuts to avoid making it worse.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I am not sure, but I believe my symptoms are stable for the moment. Since I do not have the root diagnosis I cannot be sure about the future.

How do you feel about having all these medical problems?

How I feel about being sick varies from day to day. Some days it is very difficult to be unable to be normal and do things other people my age wouldn’t even have to think about.

What is the worst thing about having these medical problems?

The worst thing for me is the inability to do theatre. This is something I have done my whole life and going without it is one of the worst things about this.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

Yes, it prevents me from working, because there are times of the day where I can’t do anything but huddle in bed with the lights off trying not to throw up.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes. I am house bound, so every aspect of my life has been flipped on its head.

Are you able to have a daily routine? Can you describe your daily routine?

My daily routine mostly revolves around diet and managing all my home classes. I am a junior and do not want to be held back a year.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

No, I don’t really need help with much except driving. I make my own food, teach myself school, etc.

Do you have any tricks to make your life easier in dealing with your medical problems?

It isn’t really a trick, but staying well hydrated can make a huge difference when managing my symptoms.

Have your medical problems had an impact on your financial life?

Since I am a minor, the bills do not affect me directly. But I do feel bad for causing my parents all of the stress that comes with having a child with ongoing medical issues.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I like to stay busy within the confines of what I can manage physically. I sing, play the cello, tin whistle and piano, and I write a lot. I hope to publish a novel like my dad.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, I have a best friend who is in the exact same circumstances as I am. It’s almost creepy how similar our struggles are. We are each other’s lifelines.

How do you explain your condition to healthy people?

Either I tell them nothing at all, or I tell them it’s like having the stomach flu for a year and a half. I usually only say that with people who clearly don’t believe it’s as bad as I make it out to be.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

“I think you’re hypersensitive.”

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, almost all the time. People can’t seem to grasp the concept of “constant”. It seems to mean “occasional” to them which is very frustrating.

Are you afraid to be around people? If so, can you explain why?

Not afraid as much as I just don’t really enjoy it. I can’t eat what they eat or do what they do and it’s a little frustrating, and difficult to explain my problems without sounding like I’m whining.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Multiple times. It almost always happens when someone close to me has eluded to me faking it or the fear that doctors will stop seeing me because they think I’m exaggerating.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes. I’ve had a pretty good life up till about a year and a half ago. This isn’t something I can just phase out of. It may be with me for the rest of my life, which is hard to think about without becoming depressed.

Do you have a message for others in similar situations that may help them?

Yes: it sucks. It really does. But we have an understanding that people who have not gone through this will never have. We will never judge a sick person on their behaviour on a bad day because we know what it’s like. “I’ve been there” sounds cliché to people who haven’t been there, but to us it’s the best we have.

And lastly, how has this illness / disability affected your relationship with people?

It strains my relationship with some people, but strengthened friendships with others. It depends mostly on whether or not they can be sensitive to my disability while treating me like a normal person.


This is the interview of Teresa Walker Stockton:

How old were you when your medical problems first started?

I was in my twenties

What medical problems / conditions do you have?

Fibro, osteoarthritis, RA (rheumatoid arthritis), DDD (degenerative disk disease), JHS (joint hypermobility syndrome), narcolepsy, 4 herniated disc, bursitis on my left hip, 3 hip surgeries, 1 neck and 1 back. I have major depression and anxiety as well.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

My arthritis is hereditary. The rest I have no reason why.

How were you diagnosed and by what kind of doctor?

My fibro was diagnosed by a rheumatologist. My osteoarthritis and my JHS was diagnosed by my primary doctor.

How long did it take for you to be diagnosed properly?

My hips and back over a year, some of it was diagnosed in my twenties, my RA in 2013. It took 6 months for my Narcolepsy to be diagnosed.

What was going through your mind when you received your diagnoses?

What treatment I would receive and if I would still be able to work.

Is there a cure or treatment for your illness? If so, what is it?

No, there is no cure for anything I have.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Yes, my pain varies from day to day. I don’t really know what helps, haven’t been able to get it regulated. I usually have some kind of headache as well as touching my head itself hurts. Very tender, deep pain like my body weighs a ton as well as some sharp pain.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I do try to do small amounts of exercises, like Pilates. It can cut back on the heaviness.

What are your worst symptoms? How do you deal with them?

Feeling tired all the time, and my body is so heavy just as an aching pain. I have prescribed medicine that helps.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Mine keep getting worse.

How do you feel about having all these medical problems?

Mad!

What is the worst thing about having these medical problems?

I can’t do what I want to anymore, my life isn’t mine.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

Yes, it prevents me from working.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes a lot, I used to be able to go anywhere and wasn’t afraid of climbing stairs and rocks. I lost my home cause I couldn’t work and had to live with relatives. Now I am living in a basement.

Are you able to have a daily routine? Can you describe your daily routine?

I don’t have a routine anymore. If I have Dr. appointment I get up in enough time to take my meds and go to appointment. Otherwise, I sleep till I wake up, take meds, bathroom and lay back down.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

I need help with picking up small things and reaching, could use but don’t have help with putting on my pants as my right legs has issues.

Do you have any tricks to make your life easier in dealing with your medical problems?

Sitting with my girls. They relax me and calm me down.

Have your medical problems had an impact on your financial life?

I have medicaid and thank God for that!

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I am trying to start again with my crocheting and horses. They take my mind off all the pain to another place.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I feel like I do better at helping others then I do myself.

How do you explain your condition to healthy people?

Most of the time I don’t unless they ask.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

My parents and my oldest son tell me its all in my head and I am too young to be sick, and I just need to find a job and get back to work.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, I feel that since they haven’t been to all the Dr appointments and the therapy that didn’t work, they don’t see where I am hurt.

Are you afraid to be around people? If so, can you explain why?

I am uncomfortable around a lot of people I don’t know or act like they are better than me. Makes me feel inadequate.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

I have been and am at rock bottom but quitting or killing myself was and never will be a thought.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes, this is something I can’t fix or make better. I have had it rough but came out of it, not with this.

Do you have a message for others in similar situations that may help them?

Always pray. Get as much knowledge as you can find out about what is happening to you with this illness so there are more able to understand and help you. Then to set a schedule and do your best to stick to it and rest.

And lastly, how has this illness / disability affected your relationship with people?

I am single and I don’t care to be with anyone. I love to go to festivals but can’t get anyone to go with me. People don’t believe that I have an illness, so they just look at me as if I am nothing; that is how my parents feel.


So those were the interviews for today, more to come soon. 

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

The shame of Kanye West!

So, I told myself I wasn’t going to do this, I would not comment on this ridiculous event, but since it keeps getting thrown in my face everywhere I look, I’m gonna comment on it after all.

https://www.youtube.com/watch?v=De_1VKqNoLg#t=46

I’m sure by now most of you have heard of the Kanye West ‘wheelchair incident’, where Kanye stopped his show and refused to continue until everyone was standing, and when two people who are handicapped did not stand, he actually send his bodyguard to go check if they were actually disabled.

I think this whole incident is scandalous. Firstly I already find it scandalous that he refused to perform until everyone was standing. People pay to see his shows, so it should be their choice if they want to stand or not, he had no right to ask that of his fans at all! That just shows how conceited he is.

And sending his bodyguard to check if those two people were actually disabled or not was scandalous, I think. Everyone was telling him, yet he still felt the need to have it checked out? Makes me outraged!

What if someone who doesn’t always need a wheelchair or crutches if they know they’ll be able to sit is forced to stand up because they don’t ‘look’ ill or disabled? What then? Would he have cancelled the rest of the concert if that person refused to stand, or would that person have stood up and silently suffered in pain for the rest of the concert? That’s one question that’s been going through my mind since this happened.

Kanye is a perfect example of what is wrong with today’s society. He’s one of those people who needs to ‘see’ a disability for it to be there. What about all of us with invisible disabilities? What would he have done if we said we were disabled and therefore couldn’t stand too long – would he have told us to leave? Would he have left himself? Because obviously he wouldn’t have believed us because we don’t ‘look’ disabled.

And he should know better, he’s a damn celebrity for Christ sake, he should set a good example for his fans to follow, not show the example that it’s OK to go and check if someone is actually disabled or not, he had no right!

My previous blog was about the injustice disabled people suffer in society, Kanye West is another injustice we have to suffer through, unfortunately. He should get an invisible illness, feel what it’s actually like, then he would never have done this. He deserves to feel what we feel after what he did. He’s everything that’s wrong in our society, and that’s the last I’m saying about him. Oh, and no, I don’t think Kanye deserves to get sick like us, I think he deserves at least one day of feeling the way we do, just so he can gain some understanding and compassion, things he is clearly lacking!

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

The Injustice…

The injustice handicapped people face in today’s society

 Society has a very skewered view when it comes to people with a disability and I’d like to discuss that today. I’m sure you’ve all faced discrimination and rejecting by today’s society, an injustice that stays with you.

For example, there’s this misconception that I’ve heard several times before, that supposedly autistic people are ‘stupid’, which is a huge injustice toward autistic people as they are very gifted (some can create the most beautiful art, some can do the hardest math question in the world without having to think it over, and if I’ve read correctly, autistic people tend to have a photographic memory). So it bothers me a lot when society presents autistic people as stupid, when they are anything but.

So that’s one example of an injustice done to people with a disability, or just people who are different. People with a disability are often looked at and talked about in a negative way, and are often treated very poorly (sometimes even by their own family). Often, people who are disabled are invisible in the eyes of others, as if we don’t matter or are somehow less than them, which we are not!

I’m of the opinion that people should be educated about what it is like for people with disabilities, then maybe they wouldn’t treat us in such hurtful ways. Off course there are people who just don’t want to be educated, because they simply don’t care, those are the worst kinds of people we have to deal with, because not only do they not understand or have knowledge about us, but they don’t want to understand, because in their eyes we are useless.

Everyone, disabled or not, black or white, Chinese or American, should be treated as equals. It’s like how women had to fight for their right to vote, or hold a ‘man’s job’, people with disabilities have to fight to have their voice heard in this world.

Take for example placards to park in a handicapped zone. Often, when you are young or you look healthy, and you have such a placard, you might face verbal attacks by complete strangers, saying you have no right to park there because you are ‘too this’ or ‘too that’. People seem to forget that anyone, no matter their age, gender or race, can become disabled. Instead of butting in where they have no right too, people should mind their own business and not question the validity of handicapped parking placards of people they’ve never even met. Another injustice of society today!

If you are a person in a wheelchair, prepare for a lot of looks thrown your way, people watching you as you pass by simply because you’re in a wheelchair, and people acting as if you’re not even there. I’ve had moments when I am in the wheelchair, that I’m being stared at like crazy, is it because I’m in a wheelchair, or that I’m young, or is it because I don’t look sick? I couldn’t say. People in wheelchairs, or just other disabilities, can often be ignored in a conversation, as if we’re too stupid to understand because we are disabled. Another injustice!

For certain disabled people, there is another big injustice they face. The right to chose to live on your own or live in a facility designed to help disabled people, but are often ill equipped and understaffed. Some people with disabilities are forced to move into a ‘home’ for the disabled, against their will, as if you’re putting an animal in it’s cage. Isn’t one of our greatest values free will? Then why does that free will get stripped away from certain people? All I can say to this is that it’s not fair, it’s not fair at all.

Then there is the issue of the work place. A lot of disabled people that really shouldn’t work anymore have no choice but to work to survive and often the work place can be a very hostile environment for people with disabilities. You might get bullied and harassed, used and emotionally abused, treated like garbage really. It’s not right at all, but it happens a lot. Employers refuse to understand your disability and colleagues then often follow the employers example, creating a toxic work place. You can report this, but little gets down about it usually.

And then we have the disability welfare issue. A lot of people with disabilities who can no longer work, get denied their disability payment, for one reason or another. It’s like the government is hell bent on making it even harder for us with disabilities, we get no support at all from the government, to be honest. That’s another injustice we face right there. An injustice we shouldn’t be facing at all. And not only that, but it certainly shouldn’t take years to decide whether or not to approve someone for disability, that’s just ridiculous in my opinion. I mean come on, they’ll put recently paroled convicts in flats in half way houses, but they’ll let disabled people go hungry and wind up on the streets, where’s the justice in that? Isn’t it scandalous that criminals get treated better than disabled people? I think it is.

And while we’re at it, let’s talk about children with disabilities and the injustice they face even as a little kid. Children with disabilities are often bullied, emotionally and physically, and constantly belittled by their peers. And what do the school officials do about it? Nothing, they’ll tell you to write a letter of complaint to the school board, or to put your child in a special needs school and then they turn their backs on you. I’m not saying everyone’s like that, there are teachers who do the best they can, but how much good can their best do if they’re not backed by their school? One person alone cannot go up against an unjust system, it’s just not feasible. Another injustice here.

Another injustice certain people with disabilities face is that they get treated like a freak show. People who sound or look weird, people who can do things with their body that shouldn’t be possible, even people who are in a wheelchair, or whatever disability you have, some people will treat us like a freak show, or like a shiny new toy to play with sometimes as well. There was this one time I was in the ER, and I was waiting for the doctor to come back to discharge me, when suddenly a whole bunch of interns came into the room, because they’d never seen anyone with my disease (Ehlers-Danlos) and they wanted to know what it was like and see what I could do. I was treated like their new toy during that moment and that shouldn’t have been acceptable. Doctors should always treat their patients with respect, always! Sadly, a lot of people with disabilities get no respect at all, another injustice done to us.

There’s so much more I could say on this topic, but I’ll leave it here because I’d like to do a follow up on this topic and I’ll need the help of my readers. I would like to do a blog on this subject, bringing to light issues different people with different disabilities have faced. So, if you’re interested in this, send me a pm on facebook or leave a comment here and I’ll get back to you. And do let me know what you think of this topic, thanks all ❤

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

What To Say…

What to say when asked certain questions.

 We often find ourselves in situations where people who don’t know us very well, and therefore don’t know about our current situation, ask us certain questions that may be difficult to answer. So I’ve decided to write this blog in the hopes that it can help you the next time you find yourself in such a situation.

What to say when people ask about work?

When we strike up a conversation with someone, work is often a subject that can come up. As a lot of people with disabilities don’t work, we’ll say exactly that. Then you’ll get asked why you don’t work. What to answer to that?

Depending on the person asking the question, you have several choices in how to answer.

  1. You can say it’s none of their business (which is the harsher way to respond)
  2. You can say you’re not comfortable discussing the reason why and leave it at that (when you word it like this, they can’t accuse you of being rude)
  3. You can say you’re disabled (then off course there will be the follow up question as to why you are disabled).

This brings me to the next question. When a person asks why you are disabled, how do you answer? Again, there are several options.

  1. Once more you can tell them it’s none of their business (be aware you may come across as rude).
  2. You can say you’re not comfortable talking about it.
  3. Or you can elaborate on your illness and risk them asking a whole bunch of questions you may not be able to answer.

Or once the person learns that you don’t work because you’re disabled, it’s possible they might cut the conversation short themselves and walk away. Though it has been my experience that curiosity usually wins out.

Off course there are many people out there with invisible illnesses that have yet to be diagnosed. I went un-diagnosed for 11 years, so what do you do then when people ask why you’re not working? You can’t just say you’re disabled, because you don’t yet know what you are, you have no idea what’s wrong with you, only that something is wrong that prevents you from working.

Once more the answers to the questions above apply. But before I was un-diagnosed and people asked me why I didn’t work, I usually replied that I was in between jobs and looking for a new one, I kind of lied because I didn’t want to face judgment. So yes, lying is also an option. Maybe not the best option, but then again, telling the truth isn’t always the best option either. And when dealing with relative strangers, no one’s gonna care if you tell a lie to protect yourself from persecution. I call it self-preservation.

Sometimes, after you’ve responded you’re disabled and have chosen to elaborate on your disability, people may ask about more than just your symptoms, they may ask what kind of difficulties you face every day.

Again, you can chose not to answer. Or you can chose to answer and risk facing disbelief (especially if you don’t look sick). I usually base my answers on how I’ve perceived the person I’m talking to so far (are they friendly, brisk, pushy?…) and then answer accordingly. It’s really about listening to what your instinct is telling you to do. In these types of situation I always try to get a feel for it and react accordingly to what my instinct seems to be telling me.

Remember there are no wrong or right answers, whichever way you answer is what’s right for you.

Then there are the types of questions that come off as rude or just downright shocking.

Like when you’re using a wheelchair or crutches and someone comes right up in your face and just plain out asks you ‘what’s wrong with you?’, how do you respond to such rudeness?

In these situations, again it depends who’s asking. Sometimes it will be little kids asking and I know they don’t mean to be rude, it’s just their curiosity showing. And sometimes it will be teenagers or adults, and then I do perceive that as rudeness.

When it’s children, there are different ways to handle it. You could just say I’m sick, but then you risk the child asking what kind of sickness, and I’m not particularly fond of trying to explain my illness to children. Usually I just say I fell, or I had an accident, because then children will just nod and sometimes ask if you’ll be okay. It’s not exactly the truth, but I find it’s the easiest way to handle curious children. I don’t see the need to scare them with talk of horrible illnesses. Sometimes a little white lie is for the best.

Now, when it’s a teenager or an adult coming up into my face and asking such a question (which is very rude when they’ve never even said a word to you), I usually respond by saying it’s none of their damn business. Not friendly, true, but they’re not exactly friendly to you, so why should you be considerate in answering them when they aren’t considerate towards your situation? I find that responding in such a curt way makes them leave faster and makes me less agitated.

Some diseases can cause a lot of teeth problems (and people always notice bad teeth, unfortunately). Unfortunately my situation also causes bad teeth, and that can lead to some pretty shocking and maddening encounters. Complete strangers have come up to me and asked me why I didn’t brush my teeth or why I’m too stupid to see a dentist?

Firstly, who are they to presume I don’t brush, or don’t see a dentist? Because I do, but it doesn’t matter because my teeth keep getting worse. They might be fine for a few weeks after a dentist visit, but then they’ll start to rot and chip off again, nothing I can do about it and I can hardly go see a dentist every day, can I?

When dealing with such people, you can give an angry reply, such as; ‘why don’t you wash? Cause you stink’ and that will make them either angry and lash out or will make them leave as quick as they came. Again, depends on the type of person you’re dealing with. I usually try to ignore them and walk away, though their words do hurt, I owe no explanation to them.

Again, I’ve had children ask me what was wrong with my teeth, and I don’t get angry then, because again, it’s just a child’s curiosity. Then I respond by saying my teeth are sick and leave it at that. The kids usually accept that as an answer.

So, these are a few examples on how to deal with certain questions being thrown your way. There are off course many more examples I could give, but the answers would be about the same as the other examples. I hope this is helpful to you when you find yourself in such a situation.

Until Later,

L.

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

Do’s and Don’ts

Do’s and Don’ts in talking to chronically ill people.

 

When you are talking to people with chronic illnesses, be it physical or mental, what are the things you can and cannot say?

First, let’s start with things you cannot do or say to a chronically ill person:

‘You’ll get better if you exercise more and eat better.’ BIG NO NO!!!

‘It sounds like it’s all in your head.’ You might as well stab us in the heart, cause that’s what those words feel like.

 ‘Are you sure that’s a real illness? I’ve never heard of it before.’ Just because you haven’t heard of it, doesn’t mean it doesn’t exist!

 ‘Surely it can’t be as bad as you pretend it is.’ Unless you are dealing with the exact same thing and the exact same amount of pain, then you have no idea how bad it truly is.

There’s a lot of things you can’t say or do around a chronically ill person. Don’t ask to borrow the meds of a person with an illness, we need our meds for a reason and we cannot afford to give them away, if you truly need them, go see a doctor.

You can’t give people ‘medical’ advice, unless you’re in the medical profession yourself. You may mean well, but you can do more harm then good. You can give suggestions and tell the person to ask their doctor about it.

Don’t tell a chronically ill person that they don’t look sick, so they must be faking. A lot of people don’t look sick but are in effect very sick. My grandfather had cancer for years and no one knew about it, he didn’t look sick until the very last few months. Being ill doesn’t mean looking ill.

Don’t tell a person with an illness to just deal with it, as if they’re going through a break-up and have to deal with that. We can’t just nod our heads and say ok, we’re dealing with it, because someone says so. We do our best, but we can’t always just deal with it or get over it. You don’t just get over being in excruciating pain every day.

Here’s some of the things you can do when dealing with a chronically ill person:

Show them support. Sometimes just being there and talking to them is enough. We may be ill, but we’re still like every other person with feelings, we want acceptance and love, simple as that.

Even if you can’t be there in person, you can always give your sick friend or family member a call. Asking us how we are doing means a lot to us, because it shows that you care.

If your friend or family member has an illness you’ve never heard of, or you don’t really know what it does, ask them to explain it to you, or research it yourself. Showing compassion and understanding goes a long way with us.

Offer us a helping hand when you can, tell us you’re here for us when we need you. Just treat us the same as you did before we got sick. We may be ill and need more help, but we’re still the same person we have always been, we’re just dealing with a little more now.

Just love us for who we are, no matter what. That’s all we want.

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks