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.

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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.

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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.

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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.

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Maintaining relationships.

Dealing with an illness, be it a visible or invisible one, and maintaining relationships with others can be extremely hard.

Oftentimes when one gets sick, they’ll lose friends, maybe even their spouse, because those people who are healthy seldom understand what it’s like to be sick and in pain all day every day.

Now I’m one of the lucky ones when it comes to spouses understanding. My husband is the most understanding, compassionate and sweet person I know. He’s always there for me and he never blames me when I can’t do anything because of my illness. Unfortunately in a lot of cases, the spouse doesn’t understand, which causes friction in the marriage and oftentimes can lead to divorce.

For those who have children it can be hard as well. The children can end up resenting their mother or father because of the illness, simply because they don’t understand. And how could you expect them to? Especially when they’re healthy; a healthy person simply doesn’t understand what it is like physically and emotionally to have a chronic illness.

Friends will stop coming over or inviting you out, they might disappear from your life entirely. Being sick is good for one thing, I think, you learn who your true friends are. It’s hard losing friends, but if they can’t handle being your friend anymore because you’re sick, then you’re better off without them. And you learn to cherish the friends who stick by you even more.

And then there’s the family you grew up with. Oftentimes family members will question whether you’re really sick or not, whether the pain you feel is real or you’re just exaggerating. Then the only family that matters is the family that sticks by you despite your illness and supports you no matter what.

And you’ll make new friends, maybe through the internet, or maybe through a support group. You’ll make friends who understand what you’re going through because they themselves are going through it.

And that’s something I’m grateful for, all the friends I’ve met in my support groups. I know I’ve met some amazing friends and I wouldn’t trade them for anything.

So yes, gaining support when you have an illness can be hard, but it’s the hard parts that make you stronger, that make you a fighter, and no one can say you’re weak after all you’ve been through. Anyone who has the nerve to call chronic illness patients weak, obviously has no idea what it’s like to be sick, and we don’t need people like that in our lives.

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Finding distractions

A lot of us with illnesses can’t work, so we stay at home all day, every day, and to cope with those days and the pain that accompanies them, we need to be able to distract ourselves, so we focus less on the pain and more on something else.

I’m lucky because my hobbies don’t require me to go outside or to be energetic, I’ve always been more of an indoors person than outdoors, and I know for some people it’s not that easy as a lot of them have to give up their hobbies because they can no longer physically do them.

I have several hobbies. I like watching tv shows and movies, can do it all day long. I love to write, draw (I’m not that good at it though, and I can’t do it every day as sometimes my hands hurt too much) and my absolute NR°1 hobby is making fan videos, which is basically taking a show (or shows) and movie(s) and edit them to a song of choice, kind of like a music video you see on MTV, just with movie and show scenes.

So yeah, I’m lucky that all my hobbies don’t require much energy, it’s a good distraction. Cause if you don’t have any distractions, all you focus on is the pain that you’re feeling, and that can lead to severe depression. Sure, distractions won’t take the pain away, but just maybe you won’t think about it every second and that’s the ultimate goal of our distractions, isn’t it? The name itself gives it away, do something to distract us from the issue at hand.

Off course there will be days that you don’t feel up to doing anything but lie in bed, those are the worst days. The days where the pain is so bad you can’t even bring yourself to even just watch a show as a distraction, because you won’t be able to focus on it anyways.

I’ve found that when I’m having one of my really bad days, I’ll lie in the couch and put in a dvd of my favorite show, close my eyes and just listen to those oh so familiar and comforting sounds and it might just lull me to sleep, if not sleep at least it calms me, lets me focus on the voices instead of the pain. That’s the thing with a favorite show, you don’t need to see the images because you’ve probably watched it so many times before you know it by heart. It’s kind of like listening to music, really.

So yeah, distractions, I’m grateful I have them.

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My life with Ehlers-Danlos Syndrome P3

Oprah Winfrey once said; ‘Where there is no struggle, there is no strength.’  I really like that saying because of the truth in it. When you deal with a debilitating illness and chronic pain, it does make you stronger, because you have to be strong in order to deal with it. Chronic pain patients often force themselves to stay strong, because our strength and perseverance is what keeps us going a lot of the time.

Because of my illness, I’ve changed a lot over the years, my life has changed a lot. Sometimes now I need crutches to walk or if it’s a long distance maybe even a wheelchair. I don’t like it, but I accept it for what it is, and I accept that these resources exist to help make my life easier. I take a lot of pills each day for various ailments, and I’ve come to accept that as a part of my life now too. I’ve come to accept that I’m different and there’s nothing I can do about it, it is the way it is. You can’t fix everything in life, that’s something I’m still trying to accept.

Support. That’s very important for someone with an illness, and sometimes, especially for those whose illnesses you can’t see, is very hard to come by. I’m lucky because I do have people around me that support me, the most important of those people being my husband.

Carl, my husband, is my rock through all of this. When I met him I was in a pretty dark place; I hadn’t been diagnosed yet and I was partying hard to just try and forget about the pain for a while, Carl helped me through it. He was there for me every step of the way and he was there for me when I was diagnosed and didn’t run away. He accepted me for who I was, illness and all, and he still asked me to marry him. I know a lot of spouses have trouble dealing with a sick partner and it breaks up a lot of marriages, and I know I’m a very lucky woman to have the kind of caring, gentle and simply amazing man I have.

I’ve also found a lot of strength in an online Facebook support group, where I’ve met all sorts of people who struggle every day, just as I do, and it’s nice to have these friends in this group, because we all understand each other. It’s a gift to be a part of such an amazing group of people.

Do I wish I was healthy? Every damn day. But I’m never going to be healthy, I realize that. And I try to take life as it comes, good days and bad. You can either let the disease rule you or you can rule the disease. You can fight as hard as you can and sure, maybe you can’t beat it in body, but you can beat it in spirit. Having a strong will to fight can go a long way, because an illness is hard emotionally as well as physically. We can’t control the physical, but we can try and keep our minds from being beaten down by our diseases. Acceptance is the first step in doing that.

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My life with Ehlers-Danlos Syndrome P2

Questions. We often ask question because we’re curious and we want answers. We ask easy questions and we ask difficult questions, and when we get out answers, we’re satisfied, but when we don’t get any answers, we keep digging until we find those answers, even if we have to dig for years. Questions that go unanswered are like a plague, they’re stuck in your mind until they’re solved. And if you’re a really curious persons, questions that go unanswered are sometimes unbearable, because we’re stuck in the moment, we can’t move on until we have our answers.

After the problems with my knees started, it wasn’t long before more problems arose, haunting me, taunting me even. My legs started to hurt completely, it didn’t stay located in my knees and walking for even half an hour hurt, and running in gym class became nearly unbearable. I started experiencing sleep problems, more and more nights were spend awake watching tv, having only a few hours of sleep if I was lucky. I started getting these debilitating migraines that often landed me in the ER. When I’d get one of those migraines, it honestly felt like I was dying, the pain was unimaginable. And I started having stomach problems; I was never a big eater, but for a while I practically ate nothing because of the pain and fullness I felt – I felt like I’d eaten too much every day when I barely ate enough to keep my weight up.

But still, no one could figure out what was wrong and why I kept having all of these problems, they couldn’t seem to connect the dots, it was like a puzzle that didn’t want to be solved. It was an endless road of unanswered questions. A lot of the doctor’s I saw barely examined me, they just brushed off my complaints and send me on my way home. Some doctors told my parents I was faking it for attention. And a few even tried to have my parents commit me to a psychiatric hospital because they believed it was all in my head, and well, that I was crazy. My parents didn’t fall for that, they knew as well as I did that something wasn’t right with my body and until we had answers we wouldn’t stop searching.

I had bad days and good days. Days when I felt like doing nothing but crying because of the pain and because I had no answers, and days where the pain was very manageable and it didn’t bother me as much.

And off course all of this didn’t make my school experience any better. I never was very popular with my classmates, and being sick all the time didn’t make that any better. I was bullied a LOT and it wore heavy on my soul. Sometimes I even wished I hadn’t been born, those were the really bad days.

Years passed and more symptoms came and went. There were a few times when I couldn’t move my arm or even my hands and fingers, everything was completely blocked and it hurt like hell, still, they found nothing visibly wrong, so as usual the doctors kept sending me home, sometimes prescribing something for the pain, simply because it seemed they wanted to get rid of me faster.

When I was 18 or 19, I don’t remember the exact year, I became really tired. For 6 months I could barely get out of bed, my throat hurt and my stomach hurt and I just couldn’t manage to stay awake for longer than an hour. And because of my history, my home physician at the time didn’t even examine me. He didn’t draw blood, he didn’t do anything. He just said I had to be more active (a lot of doctors said that). And worse than the tiredness and stomach and throat pain was the fact that all my other symptoms seemed to flare up, I’d never felt worse. Eventually I wound up in the ER with a high fever and because I was getting dehydrated because I couldn’t keep anything down. Then they said I had Mono. I stayed in the hospital for a week and I felt better with treatment and even though the tiredness stayed for a long time, I was happy that the pain was less.

Off course the Mono wasn’t the cause of my other symptoms, they still went undiagnosed.

When I was about 20, I think, I dislocated my right shoulder several times in a period of a few short weeks, until my shoulder seemed to be completely blocked and it hurt all the time. Again, they took X-rays and MRI’s and even injected color dye to find the problem, but they never found anything.

After nearly a year of constant shoulder pain accompanied by my other problems I finally went to a rheumatologist. And she said my problem lied with my connective tissue and she referred me to a geneticist. She promised I’d finally have my answers and I believed her.

I was nervous about my visit to the geneticist, but more than that I was elated – finally I would have answers and finally they’d be able to cure this pain! It turns out it wasn’t that simple. Did I get answers? Yes. The doctor told me I had Ehlers-Danlos, hypermobility syndrome. I’d never heard of that disease ever and I didn’t understand even half of the doctor’s explanation, all I wanted to know was how we could cure it. That’s when he told me there was no cure for it, there isn’t even a treatment plan for this disease. I basically got told I just had to live with it and deal with is as it progressed, and it would progress fast in the next couple of years, and would get worse.

When I was told there was nothing they could do I felt my heart shatter into a thousand little pieces. I was devastated. All these years searching for an answer, searching for help, and then to hear that, I just felt completely broken and drained. I cried for days after. I didn’t understand any of it. Why me? Why was there no cure or even a treatment for this? Why this disease? They said it was genetic but no one else in my entire family has this disease, as far as I know of, so why me? I could’ve asked the same questions a thousand times, but these were questions that would never get answered, because there simply wasn’t an answer for questions like that.

I simply had to deal with it, right? There was nothing else to be done, except search for ways to ease my pain and make my life a little easier. Which was easier said than done, here I am, almost three years later and I’m still searching for something, anything that can help with the pain, because so far I haven’t found much that helps.

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My life with Ehlers-Danlos Syndrome

So, I’ve been thinking of what to write about next and then I got some wonderful advice from a dear friend who told me to just write about me and my illness and how it’s affected me. So my next few blogs will be about this illness I’m living with. It will be a glimpse into my life.

Ehlers-Danlos is an inherited connective tissue disorder with different presentations that have been classified into several primary types. I have type 3, which is the hypermobility type. I’ll get more into this later on in the blogs.

I was always kind of a sickly child growing up. I had the flu a lot, as well as other minor illnesses that kept me from school more than a regular child. But I, nor my family, really thought anything about it; we figured I just didn’t have a great immune system, and it wasn’t that bad, the illnesses I got were almost always pretty minor things. So we didn’t go to doctors to ask if there was a problem, we just let it be, especially since our physician never told us we should check into the reason I got sick so easily, we all just accepted it.

I think I was about 10 years old when my real problems started. I used to play this sport called Handball, and I liked it well enough, but then I started getting problems with my knees. I remember the first time it happened, I was in gym class doing an exercise when suddenly my knees caved in, no warning, they just caved in and I hit the floor. And when they helped me up, it was incredibly painful to walk or to support my right knee (I remember it was the right one, because in the beginning it was always that one), I was limping and crying by the time I got to where my parents were waiting to pick me up. They were shocked to see me in such a state. So, that night we went to the doctor and he couldn’t find anything wrong and he said it was probably because of a wrong move I made with my legs. He prescribed me a pain killer for a few days, told me to take it easy and send me home. We had no reason to think he could be wrong, so we were optimistic that the pain would fade in a few days and it wouldn’t happen again.

Sure enough, a few days later my knee felt better and I was ready to be my active self again. Nothing else happened for several weeks and soon I’d forgotten all about it, until it happened again. The second time it happened it hurt even worse and my parents took me to the ER. They took some scans and stuff of my knees, but couldn’t see anything wrong at all, so they too prescribed me a pain killer and send me on my way home. Again, we had no answers.

And that was the beginning of what would become a long and difficult road, filled with doctor’s appointments, visits to the ER, even panic attacks. Even though I didn’t know it at the time, when I fell down that first time it was the beginning of a different life for me, a changed life. Things would never be the same again, I would never be the same as I was before. That one life changing moment, a moment I didn’t even realize was significant until much later, that moment has stuck with me for years, haunting me with the question of ‘why?’. Why me? Why then? Why? Why? Why? So many questions that would go unanswered for years, questions that would haunt me in my sleep.

Being ill is hard enough, but being ill without knowing why is unbearable. Having no answers to your questions is incomprehensible. And it fills you with self doubt. Am I really feeling all of this? Is it in my head, like the doctors say? I could have given up searching for answers, but I knew something was wrong. I knew it and my parents knew it, it seemed it was only the doctors that didn’t know it. So we didn’t give up, we kept fighting to find answers, and one day we would get those answers, but it was a day far far away in the future. You think getting ill is hard, you have no idea getting a diagnoses would be even harder…

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