Stigma and me

I don’t know how it is for other people but I resisted the term disabled for some time. Mostly because of the stigma. There is a boat-ton of stigma associated with fibromyalgia. That it is just depression, that we are just lazy, that it is all in our heads. It was predominate when I was younger and just diagnosed and still felt now. I hid that I had it. I rarely talked about it. And when I did reference my health I referred to it as a chronic pain condition, vaguely and left it at that. Certainly I didn’t say i was disabled.

To be honest there is this implication we are expected to conform to societies norms. Or even pushed to by medical professionals. Like there is nothing all that wrong with us. That we should strive to do so. And I always tried to do exactly that.

What I discovered in university was that every since summer job I tried was horrible for FM. Pretty much any job where you were on your feet all day was a no go. Any job with repetitive movements would not work. Any job with regular moderate lifting… nope. Any job with shift work, also a no go due to migraines actually which due to the fibromyalgia insomnia causing the sleep deprivation trigger to really kick in. So clearly we do not Conform because right off the get go we have job limitations. We have to be very, very selective of what job we choose. And I aimed for a desk job. Of course sitting in one position for any duration is also painful, so i learned pretty quick you have to shift position regularly and get up and walk about often.

Nevertheless I adapted. Figured out how to work around the fibrofog as best that I could. Tried to figure out ways to cope with the rather problematic IBS-D in the workplace, which isn’t exactly a fun experience. Pushed through the pain. And never referred to myself as disabled. I had a chronic condition that I was coping with as best as I could and no one was accommodating me for it.

Then came the migraines which developed into chronic migraines. Not to mention asthma and hypothyroidism. But mostly a vast increase in Pain. And I couldn’t cope. And I had a hell of a time maintaining work. It was still implied I Should be capable. But I was put on short term leave after short term leave, as if that would somehow make some sort of difference. I began to realize I cannot compete. I cannot maintain. I am disabled by pain. Just the way it is. Whether the medical community accepted it or not. Whether my workplace accepted that or not. They actually said, at that time, they didn’t accommodate for people with my issues because it wasn’t a ‘physical’ disability. In other words they considered only visible or acceptable disabilities to be valid. I wasn’t deaf or blind or in a wheelchair. They are better now, or the branch I am in is better. But the stigma can be found everywhere. You are just not disabled enough to be disabled… not the right sort of disabled. And if they decide you Are disabled then they layer all the more stigma upon you. So there is simply no winning.

I didn’t want the label because I didn’t want the stigma. Turns out society didn’t consider chronic pain to be disabling enough to earn the title of a disability. So I was indeed expected to conform to societies standards. And I could not. In every way possible I failed. And I was quite aware of my failure. And it made me very depressed. We want to succeed. We want to find a niche and be respected and to have motivation… we wanted to belong. To be productive, with our health issues.

Not to fail. And hate ourselves for it. To know we cannot do better but it is demanded of us. To feel so guilty. And try pushing through the pain to try harder, having no life because we exceed our pain limits in the process…. and still failing.

This is why accommodation is so bloody important. We can succeed. We can be productive. Accept we have a disability. Accept it needs work modification. Do it. And enable that employee to be a productive member of the team.

Anyway, I excepted the term when I understood I was disabled by the pain. I was limited by it. I was not able to perform the same tasks as the average person. I wasn’t able to maintain work of any sort full time.

The medical community resists putting disabled people on disability. And I understand their reasoning but partly I think it is the same stigma I faced when they wouldn’t accept how disabled I really was. The pain clinic was the one that accepted my real level of functioning, or non-functioning. They want us to play the game at a different level because to them the game still has value. But to me, the game is a form of torture. The depression, the pain, the fatigue, the cognitive issues… all make it hell. We are still expected to fit into that work role. As I get an IBS-D flare and run to the bathroom 20 times. Or with severe nausea vomit in the bathroom all day. Then I have migraine confusion and keep forgetting how to do a transaction or what I was doing in the middle of doing it. I am playing a different game altogether. It is called chronically ill personal tries to function and get job done without effing the hell up again.

Nevertheless being disabled by pain people cannot grasp it. How can I be disabled by fibromyalgia and migraines… if it wasn’t by something I did? I must be doing something, not doing something that caused it. If I only did… more I would help cure myself. They basically are the ones implying it was my fault it happened. And my fault it is still this way. They don’t believe I am in pain all the time. Only when I am in extensive pain and show pain behaviors … that they believe to be when I am in pain.

Anyway, we are disabled. If you feel you are at that point. Then own it. There is stigma for everything in life. We need people to stand up and own their disability.  I didn’t own it because of the stigma and because for some time I coped well with FM. But I took on that label when it applied to me and I accept it. I can’t do certain things and I have to do certain things differently. I am not like the average person. I am cool with that. I cannot compare myself to the average person because it would make me feel guilty as hell. I compare myself to myself of yesterday… if I improve on myself that is a good day, my friends.

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