This quote has stuck with me for some time because I am ‘too abled to be disabled.’
All my life it has been. Hypermobility syndrome… exercise. Fibromyalgia, you can still be fine to work and for many years considered too young to even treat. Chronic migraines? You can’t work full time, but surely you can still work. It was always about how to get me to work. How to get me back to work quickly. How to keep me working. And only recently at the pain clinic and acknowledgment that I simply cannot work full-time… took someone over a decade to realize this. After a decade of me struggling to push through the pain to work and failing too many times, enraging my employer, all the threats, and ultimatums. Going on short-term leaves, and my doctor asking when I was ready to come back… pushing and pushing. Going on a long-term leave… insurance company pushing to get me back full-time. And you realize, other than family and friends, no one in society accepts the limitations of chronic pain disability in youth and people in their working years.
People insist it isn’t a challenge. That the pain isn’t a limitation. Even as we are told to moderate our activities and limit what we do in a day. We are told this and then expected to do the exact opposite.
When you are too able to be disabled they will pressure you when you are on insurance for when you will return. When you comply with the things they ask they will say you are cured. They will say you are improved because they want you off the books. When you ask for accommodation from work they will think of you as a problem, as a complicated employee causing problems when they don’t need to. I actually had it said to me accommodations were for people with ‘physical’ disabilities like could not walk, not what I have which she said isn’t really classified as a disability. What I want is job-sharing which is offered on the HR site but no one ever offers it. In fact, everyone says no, you cannot do anything but work full-time in that position. Impossible to do otherwise. I know it is a lie. But clearly, they think I am too able to be disabled. They must think I exaggerate this pain. That I love the guilt that comes with not working. That I love to feel unproductive and worthless.
Sick, but not sick enough. Invisible illnesses can be doubted. And sick but not sick enough means we have to fight stigma all the time around the fact our illnesses cannot be seen and Known.
Why are you fine one day and not another they ask? Well, you see I am in fact not fine one day. One day my symptoms and pain are manageable or functional and other days it is intolerable and nonfunctional. Pain varies. And sometimes just my tolerance varies. Days of 8s in a row will drain a person down.
What do we do when we are too able to be disabled? I believe I crossed the line into disabled but I firmly believe society sees me as too able to be disabled and that perception affects a great deal. Affects my work a great deal. How they will or will not accommodate me. Insurance companies insist you are fully functional and can work your job, despite the fact all evidence suggests you can’t. You give that evidence to them and I think they just shred it or something.
They clearly don’t want us to be Disabled disabled. They want to See it. They want a real reason to say this employee fits under that category and if we have to accommodate them then at least we know why we have to. Then they can pat themselves on the back for being all-inclusive. All the while those of us with disabilities they discount are having a hell of a time working in that environment with no flexibility at all for our chronic conditions.
I know full well there are good employers out there. I just never my fair share of bad ones. Sick of this pervasive view that I can’t be disabled because it is not visible. Not something they can see. And anything else is insignificant.
There was a time I came to work, under threat of being demoted. So I had to come. No matter the pain and symptoms. Well, it was vertigo and it was nasty. And it made me nauseated. I threw up in my garbage can four times because I could only make it till the customer left my office with no time to get to the bathroom. I had to go to the bathroom all day. You see it was not just a 9 migraine with horrific nausea and vertigo. It was also diarrhea from the migraine. I had discovered I could not take Pepto for it as that made it a crapping horrible pain instead. So a lot of running up and down the stairs. Going to the bathroom, throwing up, and back into my office to try desperately not to do so with my customer, a few times excusing myself for a second anyway. Anyway, I started to get ill. All that loss of water fast caused shaking and trembling and dizziness. To the point that I had trouble being upright. I could not drive home at lunch because I could not drive. I had to curl up in a ball on the couch in the basement and rest. Near the end of lunch, I went, all shaky as hell, to buy a Gatorade to get my electrolytes up. In other words, I was at that danger zone in dehydration from getting sick, which I wouldn’t be if I had been at home handling it and I have a few meds to help with that, and a drink to drink to resolve the issue if I get that sick. I mean customers were pointing it out. It was embarrassing. I had to say I had the flu. I ended up in the ER after work to recover from the vomiting and diarrhea. As a result, of course, the migraine persisted into the next day. I was so damn weak that didn’t surprise me.
I wonder if someone had the stomach flu and was violently ill… would they have been forced to work? Makes me wonder. The examples I could use, but that was a very unpleasant shift. And I think people will relate if they ever had severe food poisoning before. Anyone want to work like that?
But enough of the ranty rant for today!