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.

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

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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!

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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.

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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.

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Short Story: Friendship of the knife

A/N: So this is not like my other blog posts. It’s 2.30 AM here and I can’t sleep, so I started writing stuff. I wrote a very short story about mental illness that I’d like to share with you all. 

Warning: This story contains thoughts of suicide, depression and cutting. Do not read if these things are triggering for you.


A big dark cloud hangs over your head, smothering you wherever you go. You try to shake it, but it’s attached to you like glue. It’s hard to breathe or to think straight, it almost feels as if you’re drowning on dry land. You want to cry, but there are no tears left to shed, you just feel numb in the end.

Why is everything so hard and painful? Why does it feel like there is nothing good left in this world?

“You need to look at the bright side of life,” they tell you, but what does that even mean when you know there is no bright side?

“It gets better,” they say, but they’re liars. It doesn’t get better, nothing ever gets better.

You look at yourself in the mirror and hate the face staring back. All you see is the face of a weak, disgusting, worthless person. You might as well be dead, no one would care.

You stare down at the razor in your hand, the only ‘friend’ you have. This razor would never hurt you, never betray you, it listens to you and only you, obeying your every command. You look down at your arms and see the rows of straight lined scars, the only thing you like about yourself. You try to resist, but you need this, need the control it offers. The razor is pressed against your arm now, waiting to be used. You cut once, twice and then one last time and admire the three fresh wounds and the blood flowing. It’s always a euphoric feeling that accompanies this, for a little while at least, but you always come down from the high. You take a towel and press it to the wounds, enjoying the sting.

No one understands why you do this or why you feel like this. You are alone in the world and there is no one that can help you. You wish you could die, but you haven’t mustered up the courage to do it yet. One day, you tell yourself, one day you’ll make sure it’s your last day. That would be a good day.

You have no friends anymore, they all left you in favor of shinier, happier people. They blamed you for becoming this way and didn’t understand why, because they all thought your life was roses and sunshine. And maybe it is, but you can’t help feeling the way you feel.

You crawl into bed and stare at the ceiling. Thoughts swirling in your head, none of them making sense.  The ticking of the clock gets on your nerves, but you have no energy to get up and turn it off. There is a knock on your door; it’s your mother.

“I’m going for a quick trip to the store, I’ll be back soon,” she calls out; you ignore her and wait for her footsteps to fade away. You don’t like being around people; they make you itch for your razor. Solitude is preferable.

You close your eyes, but sleep doesn’t come, no matter how much you want it too, and worse yet, the empty feeling has returned, overpowering the euphoria you felt from using your trusted razor blade. The corners of your eyes sting with tears, but you refuse to let them out; crying makes you feel even worse.

“You need to let it out or it’ll consume you. Write it down, everything you’re feeling. It might make you feel better, make you feel less alone,” the psychiatrist told you. That was weeks ago and you hadn’t followed her advice, but maybe you should. It couldn’t make you worse, could it?

You get out of bed and walk over to your desk. You grab a piece of paper, a pen and start writing, and once you start, you find you can’t stop.

Everything you kept bottled up for so long comes out through the power of words. The emptiness, helplessness and suffocating feelings all come out on paper. The anger and hurt you’ve been feeling, the razor that’s your only friend; that piece of paper knows it all now, and it doesn’t judge.

You write for hours; everything you have kept inside for so long, and in the end, you do feel a little bit lighter. You’re not cured, not by a long shot, but maybe this would be the start of the road to recovery.

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

Healthy People Say Stupid Things

As you can see by the title, today I want to talk to you all about healthy people saying stupid things to people with chronic illnesses.

We’re all familiar with the ignorance and stupidity that can accompany healthy people while dealing with unhealthy people.

For example, I know this girl and she knows about my condition and that it’s steadily getting worse, yet she insists on saying ‘get better soon’ every time we conclude a conversation. Why would she say that when she knows I’ll only get worse and not better? Hearing that every time we talk is kind of a downer, because it just makes me even more aware of my worsening condition, and even though I’ve told her to stop saying that, she still says it every time.

It’s like asking a person with cancer if they are OK – off course they’re not fine, they freaking have cancer! Once more, the stupidity of mankind comes forward.

Another ‘good’ one is this: ‘Maybe you just need to eat more and exercise  more, or maybe you just need to lose weight, then you won’t be in pain anymore.’ Seriously, how stupid can people get? Don’t they realize that if any of those things would make the pain go away, we’d be doing them every day. Chronic illnesses don’t just go away by waving a magic wand!

I’ve also heard this one: ‘You must feel so much better now you no longer have to work.’ NO! I don’t feel better, I feel worse because my disease is getting worse. If  I could work, I would work. And we don’t decide when we feel really bad and when we have the ‘good’ days where it’s not excruciatingly painful to be awake.

Today I even read an article written by a healthy person saying pain is just in the mind and if you put your mind to it, you won’t feel anymore pain. Reading that, it was clear this person had never felt real pain in his life, or he wouldn’t have written something so stupid.

It is obvious by things healthy people say that a lot of them just don’t understand what it is to be chronically ill, so they blurt out stupid things without thinking.

Sometimes I try to correct people when they say those things, but I’ve come to learn that they’re just not interested in hearing what you have to say, because they honestly believe that what they are saying is right – it’s very frustrating.

We face these kind of stupid sayings on a daily bases, whether it be in person or online. When a healthy person tells us we just need to ‘deal with it and stop whining’, it hurts… a lot! We deal with our paint the best we can, but we can’t just deal with it and make it go away, it’s not possible.

So, what can you do when faced with the ignorance and stupidity of the human race? Do you engage them in a debate you’ll never win because they don’t want to admit they’re wrong, or do you walk away? My advice? Just walk away, people like that aren’t worth our time or efforts, we have more important things to deal with (like trying to get through each day without breaking down). Engaging those people will only cause you stress and make your symptoms flare up like a red neon light.

So, next time you encounter one of these stupid sayings, ignore it, delete it, just walk away from it. You don’t need the added stress these people can cause you. Focus on something else, something you like to do or talk to a friend, you’ll get much more out of it than dealing with ignorance and stupidity.

Until next time,

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

Daily routines for chronic pain patients.

So, today I want to talk about daily routines among chronic pain patients, a topic I think should be addressed and educate people.

When you’re a normal healthy person, you quickly fall into a daily routine (even when you’re young). Young people have a routine of school, homework, dinner, sleep and repeat. It becomes an unconscious habit to follow the same routine everyday. The same goes for adults, they’ll have the routine of work, maybe taking care of the kids if they have them, make dinner. Whatever they do, it always follows a pattern, it’s basic human nature to follow a routine without even consciously deciding to have a routine.

Now, for chronic pain patients it’s a completely different story. We don’t have routines at all. We may make lists of what we would like to do the next day, but ultimately those lists stay the same as most days we can’t do it. We never know how we’ll feel the next day, so we can’t establish a steady, healthy routine. One day we might be feeling good and do some things around the house or go out for once, and the next day we might feel like total and utter crap, and we aren’t able to do anything.

Our pain is a big reason why we can’t establish a normal routine, because we aren’t like other normal people, we’re chronically ill people who never know what the next day might bring.

There will be a lot of people who think you’re lazy because you don’t work, you don’t clean the house every day and don’t cook every day, they’ll think you’re faking it even though you can’t muster up the strength to  get out of bed, because you’re hurting so much.

And just because we can’t have a normal routine, doesn’t mean we haven’t tried. Trust me, we try as hard as we can, but it’s not our fault that the pain gets in the way most of the time.

For example, I make a ‘to do’ list every evening for the following day, and write down everything i want to do and that needs to be done. And at the end of the next day, I use a blue marker to scratch off the things I’ve done and a purple marker to scratch off the things I wasn’t able to do. Most of the days my list ends up decorated with more purple marker than blue. So then I move all the things I didn’t do till the next day, and keep doing that until I’m able to complete the tasks I set for myself. That’s the closest I can get to having somewhat of a routine in my life.

Our pain prevents us from having routines and it prevents us from planning a head. If we schedule a vacation with the family, all we can do is pray and hope we’ll have a few good days during the vacation so we can enjoy it. We can’t really call up a friend and ask them if they want to go out with you the next day, because we have no idea how we will feel the next day, and it’s better not to plan anything at all than to plan it and then be disappointed when you have to cancel it because you don’t feel good.

The saying ‘Taking it one step at a time’ is the best I can describe what it is like for people like me. We take each moment as it comes and we go from there, this way there isn’t any disappointment over missing out on things you’ve planned, because you don’t plan very far ahead, we literally and figuratively take it one step at a time. That is basically our routine.

If you are a healthy person who knows someone with chronic pain, then I hope this can make you understand a little better what it is like for us.

Don’t hesitate to comment and tell me what your thoughts on this subject are.

Until next time,

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

But you look so good!!!

‘But you look so good!’  

I know most of you with invisible illnesses will recognize this phrase as something that’s been thrown your way. Because your illness is inside your body, unseen to the world, a lot of healthy people will judge you and even go as far as calling you a liar, or telling you you’re crazy or that you’re nothing more than an attention seeker. Healthy people simply don’t understand what it is like to live with an invisible illness.

Unlike illnesses that are seen when people look at you, invisible illnesses aren’t seen and therefore people who suffer these invisible illnesses will face judgement and persecution from the people in their lives, and sometimes even from stranger.

When I’m walking with my crutches, or am in my wheelchair, the first thing people do when they see me is look at my legs to see what’s wrong with them, and when they can’t see anything wrong on the outside, well then I must be faking, mustn’t I? That, my friends, is a classic example of the ignorance that runs in people’s veins.

What healthy people don’t seem to realize is that there are a LOT of invisible illnesses people can suffer from, illnesses that can be debilitating and can render you unable to work. Take for example Chronic Migraines – people who’ve never had them, think you can compare them to a regular headache, and that the people who suffer from chronic migraines are exaggerating their pain to gain attention or get out of having to work. They don’t realize that migraines feel completely different from headaches, and that they can get so bad they put you in the hospital. I suffer from such migraines, and while my doctors didn’t call them chronic migraines, they called them debilitating migraines because they are so bad. A really bad migraine basically feels like your head is being split open, it feels like dying, honestly. Off course, you can’t see migraines on a person, they’re invisible.

My disease is called Ehlers-Danlos, a connective tissue disorder, it is unseen by the naked eye. The same goes for rheumatoid arthritis or fibromyalgia or Lupus or Lyme disease, all these illnesses are for the most part, invisible. But just because you can’t see them, doesn’t mean they’re not there.

And then there is the other side of the invisible illnesses. Above I’ve listed illnesses that plague the body and are invisible. Another sort of invisible illnesses are mental illnesses. Bipolar disease, schizophrenia, OCD, these are all diseases that are invisible, can be debilitating and can keep you from being able to work. Sometimes it’s even harder for people with mental diseases, because when you have a physical invisible illness (such as rheuma), you can explain what it is, at least, you can try and make people understand. But you can’t do the same with mental illnesses, because people who don’t suffer from mental illnesses will never understand what it does to someone who is affected by it. If you have a mental illness, you can try to explain it to a healthy person till you’re blue in the face, and they might say they understand, but they don’t, not really. They can’t understand unless they’ve been in your shoes.

There are three kinds of people you will encounter when you’ve been diagnosed with an invisible illness. The first kind are the people who believe you when you say you’re hurting, even if they don’t completely understand, they’ll stand by you. The second kind are people who will go up to you when you park in a handicapped parking space and chew you out for not looking sick but using such a parking space, they’ll be rude and obnoxious and ultimately, they’re insignificant and don’t matter at all, ignore them, I say. And the latter group of people are those who will act all nice to your face, say they understand and believe you, and when you’ve turned your back, they’ll tell all their friends about the girl who claims to be sick but looks good; they’re what I call backstabbers.

It’s easy for someone to say to ignore those who put you down, pretend you don’t hear them, walk away. It’s very easy to say but it’s not easily done, I know that from experience. No matter how much you tell yourself the haters and backstabbers don’t matter, their words will still affect you, they’ll still leave you breathless and crippled on the inside.

And sadly, a lot of the times the people who will put you down will be family or so called friends. I addressed that issue in my previous blog of maintaining relationships, as some of you might recall.

And now I would like to say something to everyone with an illness, mental or physical, visible or invisible. YOU ARE STRONG! Most people have no idea how hard it is for people like us to get through each day, but we do it and we try our best to keep our heads high. We’re not just strong, we’re warriors, fighting a battle every single day. And you might not be able to shake the illness, it might be there your entire life, but some days, on the good days, you can say that just for a little while, you rule this disease, it doesn’t rule you. You can control it, instead of it controlling you. You can take a stand and fight and remember that there is beauty in life and that every second you’re alive is precious. It will be hard and it will knock you down, but you can take a stand and refuse to let it destroy your entire life. Your life is still your own, and what you do with it will define you, your illness doesn’t define who you are, that’s all up to you. You can show the world the strength of a warrior, or you can go down with the ship and give up. That is your choice.

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