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A reflection in people being uncomfortable with it; including myself.
Condolences, sad faces, private messages offering advice on just about anything I could do to “fix me”, that has absolutely nothing to do with my condition. Or worse, “words of wisdom”; insisting that my disposition could be improved by simply changing my diet and taking oodles of supplements. I told myself two years ago when I did my first awareness campaign on social media, that I wouldn’t bother doing it again; because the number of people who thought they had all the answers; the answers that even my doctors don’t have, were astounding. Don’t get me wrong, their hearts were in the right place, but my head was not; I was grieving.
Back then, I was also silenced by the people who passive-aggressively told me I shouldn’t advertise my problems.
“I don’t know why people feel the need to publicize it every time they have a surgery or whatever wrong, ya know, isn’t it silly?”…
Bringing awareness forth about EDS was important to me because of the lack of knowledge within the medical community was so staggering.
But oh, ok, whoops – sharing about surgeries; that was something me and my husband did in looking for support, comfort, company. I’d had seven surgeries in four years, so I had become pretty isolated in that time. I also looked at each surgery as a hopeful opportunity to “get my life back”. To restore myself to “whole”, to win, and I wanted to celebrate this with my family and friends. But some of those people, I found grew tired of hearing it. I thought my posts were being mostly optimistic, but I guess somehow it screamed for attention.
Previous to all this I was the athletic, social butterfly, corporate manager, do-it-all new mom. Until I became the “dreaded” D-word. I wouldn’t admit it to myself, nor others, for the longest time; until just recently in fact. I still have a hard time saying “I’m disabled” when I meet someone and they ask me what I do for work. This image of a strong, powerful, do-it-all woman that I could no longer be? Disabled now? Yes! I am…
It wasn’t some horrific accident; it wasn’t a well-known disease; it wasn’t something you could readily see. For all anyone knew, I went from being totally fine to suddenly broken.
I kept hearing things like;
“You just need to get back out there”
“No woman is the same after having a kid(s)”
“I think you are depressed”
“Why would your body all-of-a-sudden have these problems?”
“You just have to keep going”
“You just need to exercise more”
“Eat more vegetables”
“You have to do what’s best for the whole family”
“You’ve put on some weight”
“You’ve lost a ton of weight, what’s going on!”
“You need to figure out how to handle stress, is all”
I could go on but I think you get the point.
Even though I heard these things and knew better of myself; I still thought less of myself. Subconsciously each comment picking away at a scab I couldn’t see. Those statements consumed me. I’d wake up, unable to bear weight on my legs because my hip would be dislocated or my pelvis twisted, and my husband would have to help me to the toilet or maybe pull traction on my legs to help relocate a joint. I would still think less of myself in the way that I was not doing enough to get on with things. In the way that you think you just need to push through it; walk it off. And that’s just exactly what I’d do. Pop the meds, push through, waddle to work, roll around in an office chair. Then, your boss tells you he can’t stand to see you in all this pain, yet turns around and dumps a huge project in your lap at 4 pm and says it’s urgent, just to test your commitment; so you stay till 8 pm because you won’t diminish your worth. I am not disabled. I can still walk, sort-of. On and off, sometimes. Ok, I can use a cane. Now I can walk if I rest a bit in between. Ok well, if I just use crutches and then stay off of my legs while not at work. I’ll lay on the floor at work; it’s all good. How messed up is that?! But this is the society we’ve created. This is the image of the strong woman I’ve created in my head. I’m gas-lighting myself at this point.
I would lose the baby weight quickly over six months which no one bats an eye at, but then an additional 20 lbs over the next four months that year, off my 138lb frame. I wasn’t even trying, but I couldn’t eat; it was like my stomach just decided to stop taking food. As soon as the food hit my belly, I would be in gut-wrenching pain. That year it got really bad. That year I seriously thought I was dying. This was the year I really started to ask “what’s wrong with me?”…
That year I saw so many specialists; GI, Neurologist, Orthopedic, Rheumatologist, Cardiologist, Allergy/Immunology, Naturopathic, Dietician, Chiropractor, LMT and PT’s, and I’m sure I’m forgetting some. Everyone had a different theory. There were soooooo many tests; most led to dead ends except for orthopedic imaging. Systemically, some led to good theories, but those would be canceled out by something else. Meanwhile, the only constant I had, that was undeniable, was the joint injury, instability and pain which I had issues with all my life really, but it increased ten-fold during pregnancy. My shoulders subluxing, my hips and knees going through numerous dislocations and I was twisting my ankles so randomly, my pelvis/SI joints were all wonky.
Then, all of a sudden my Rheumy just made an off-handed remark one day that changed everything:
“I bet you did a lot of circus tricks to impress your friends when you were younger, didn’t you?”…. Totally out of the blue, checking my reflexes and this comes out of his mouth.
I, sort of nervously laughing, unsure of where this is going, and acknowledged this was so.
To which he replied, “I have a hunch”.
He then put me through a series of maneuvers which I now know, to be part of the criteria to diagnose Ehlers-Danlos syndrome. I still score a 9/9. Yes, doctors still put me through it. I’m not sure if it’s for their own entertainment or what, but they usually have the “kids” with them (teaching hospital) and usually preface it by saying “your hyper-mobility is so remarkable at your age – do you mind showing Xyz?….” I do try to oblige in the name of medicine. Anyway, I didn’t leave with a diagnosis that day. Rather, he asked if he could follow me more regularly as a primary patient – he knew I was searching for a new PCP so I felt like he was answering my call for help on this. It would still be another year before giving me the diagnosis of hypermobile EDS (hEDS).
With that, I was told “it doesn’t really mean anything as far as treatment goes. All we can do is treat your symptoms as they arise. So we manage your pain as best we can. We intervene with orthopedic surgeries where appropriate. You may benefit from psychotherapy. Certainly, physical therapies will be an asset. You have to figure out a way to maintain the muscle you have, but this will be tricky; lifting weights really isn’t a good activity for you, and no yoga, and you may absolutely not go back to running. There is no cure – this is a genetic defect, BUT, the good news is it explains this rapid deterioration you’ve been experiencing. You will need to learn to manage these problems as best you can.”
At the time of this diagnosis I was facing my first hip surgery, and I honestly didn’t give this doctor’s words much weight. Actually my thought was “right, I’ll show him! Can’t keep me down – and I sure as hell, WILL be running again!”
There is a whole lot that happens between “I’ll show him” and the reality of what I’d actually face, but I won’t bore you with the gruesome details. The point here is supposed to be that by now I am five hip surgeries deep (in three years), and wrist surgery and I’m still trying to work knowing full well I have more surgeries on the horizon.
Why? Because I am stubborn and I refuse to surrender to the fact that I am disabled and the people in my life won’t let me either!
“Well, you just work at a desk all day, can’t you manage that?”
“What if you alternate between sitting & standing?”
Certainly, you could work part-time couldn’t you?”
“I don’t understand why you’re not better… Didn’t they just fix that?”
“You’ll get better, you just have to will it to be”
“You just need to get into a routine”
“Just take more breaks throughout the day”
“You have to want to get better”
“Pray” & “Count your blessings”
“Why don’t you put the cane behind you for the picture” (yes, someone actually said this)
“You’re too young, to be disabled”
“Is that your grandma’s handicap sticker?”
“In my day we called those stickers the ‘sick, lame, and lazy sticker'”
“You’re too pretty, to be disabled”
“Don’t give up”
Here’s the thing people. No one is gunning to be disabled. No one is sitting around and one day says: “hey, you know what would be great? Being in an unimaginable amount of pain every day and missing out on doing all the things I love.” Telling my kid no, every time she asks me if I can take her to an amusement park (for example). I’ll never experience the joy of that with her, amongst other things. I am a big kid at heart myself; I would love to go hiking and explore the woods, camping, go on thrill rides, skiing, etc… No one wants to give up their career, no one enjoys being dependent on someone else for their daily care and income – it’s a tremendously helpless feeling. Losing your independence and your sense of identity is an unimaginable loss.
But what is worse to me; is the amount of time I’ve spent diminishing MY WORTH over being disabled. I can’t believe I have wasted so much time fighting against my own body. Being at battle with my mind because my heart aches for a life I am no longer capable of having, in the physical sense, that I deemed worthy of the life, to begin with contingent only upon what I could do at a certain physical level. It was so ridiculously shallow of me. I’m angry at myself for it.
So every time someone questions my diagnosis, or says “just do this or that” or proposes some sort of quick fix that is “simple”, yes – it’s infuriating to me. I’ve literally tried everything. There is a global consortium of doctors, researchers, and patients working on this that I follow closely for new information. I don’t tell you this to make you feel bad and I know you don’t do this to hurt me – but just know that I am ok being disabled; I don’t need to be “fixed”! I’m not really broken in that sense. I need YOU to be ok with me, being disabled. I’ve accepted where I’m at and I need you to accept me where I am at too. So that may mean when you ask me to do things, if it’s a physical activity, my answer may be no. If your solution to that is “oh well, you could just hang out at a picnic table while we take Ava on the rides”…. Probably, no thank you; I prefer to be excluded in the comfort of my own home.
Get used to me setting boundaries and expressing my needs. That is not being difficult, nor selfish, nor is it giving up on myself; I’m taking care of myself and that’s growth. Know I will have some days where I might feel better than other days; I’m still disabled. Know that if I choose to push myself one day, it does not mean I am all better and will always do that. Chances are I spent the following 3 days in bed having done so and I’m most likely not going to do it again. I am still that strong-ass woman I always wanted to be. Perhaps I’m even stronger. I am not too anything to be disabled. I am disabled and I am a lot of other great things too.
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