Definition of disability - a physical, mental, cognitive, or developmental condition that imparis, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interaction.
I was a normal kid. I played in the snow, wearing a snow suit or those snow overalls and a big jacket and gloves. Or without gloves. When you're a kid, little things like freezing cold weather doesn't so much get to you. Or at least, it didn't get to me. I took skiing lessons, I went sledding, I made snowmen. I also drank cold cans of cokes, I played with ice, I got cuts on my hands and fingers and everything was fine. My body worked.
Early in high school I started snowboarding. I got a snowboard for Christmas and my friends and I went down the bunny hill until we stopped falling and then we went down the rest of the mountain. I never learned how to carve; I stayed heal-edge the whole way down, but I did do a jump once! One time we were on a pretty steep trail and I somehow got turned around and went really fast backward down the hill and almost went over an edge. My memory tells me is was a sharp cutoff and I would have landed pretty far down, but if that were true I doubt I would have been on that trail. We never went on the black diamond trails. But everything was fine and my body worked.
Something changed later on in high school, though. My hands started changing color when it was cold out or when I was stressed. It wasn't significant at first, just blue or purple fingers and toes, but things were fine and my body worked. Then it wasn't and it didn't. My fingers and toes started turning white. It started to hurt when they would warm up. Bad. One winter right after this started happening I tried to go snowboarding. After one run down the bunny hill, I spent the rest of the day in the lodge, trying to warm up my hands, trying not to cry from the pain, alone. I had all the right gear, or so I thought. I had no idea what was happening to me. That's when I went to the doctor.
I have an autoimmune disorder called Mixed Connective Tissue Disease. It's a disorder closely related to Lupus, the most famous of all the autoimmune disorders, but it's not Lupus. Mixed Connective Tissue Disease (MCTD) is actually kind of a combination of Lupus, an autoimmune disorder called systemic sclerosis, rheumatoid arthritis, and myositis. It's called an overlap syndrome because it has features of all of these other disorders. Neat!
One of the symptoms I have is called Raynaud's phenomenon, where when my fingers, hands, toes, and feet get cold (or when I get stressed emotionally), the capillaries (the tiny veins at your extremities) constrict, which cuts off blood flow. When my extremities warm up it is incredibly painful to an extent I don't know how to explain. Yes, it is sort of like when your foot falls asleep. Like that, but maybe ten million times worse? Blood also doesn't really stay in my hands easily. I've been experiencing Raynaud's for so long and it's a progressive disorder, that my hands are always cold at least and pressure or vibration can aggravate the Raynaud's.
I also am at a higher risk for organ failure, generally. In fact, most deaths of those with MCTD are from heart failure due to high blood pressure, but I have low blood pressure so everything is fine. I'm fine. It's fine.
Actually, really, I don't know if everything is fine. I don't know the condition of my heart and lungs. I should probably go to the doctor, but who has the time, money, or emotional stability to see a doctor nowadays?
The truth is, I've had to confront my own mortality in a way that most people my age have never had to confront until they're much older. I spent my late teens and all of my twenties grappling with the fact that I will die from this. It will only get worse. I likely will not live to a ripe old age, and if I do I may not be able to hear anything or digest food normally. All of my physical health problems are related to my disease, and I have and have had a lot of physical health problems.
But, do I have a disability?
I never considered my condition to be a disability. It's something I never talked about, only brought up if someone asked (or in the case of my brother's ex-girlfriend, screamed) about my hands turning white. But generally, people don't say anything or think it's paint or chalk. I went about my life doing things I could do, not doing things I couldn't do, and I never used it as an excuse to not do something, even when I probably should have. I never talked about it and I tried not to think about it. Because it was fine, after all.
The thing is, though, I might have a disability. I have a physical condition that impairs, interferes, and limits my ability to engage in certain tasks or actions or participate in typical daily activities. That might be pretty close to the definition, I think...
And it's not just snowboarding or playing in the snow or with ice or holding cold cans of coke. It's not just that part of the reason I quit one of my old jobs was because I regularly had to be outside in cold temperatures or that I decided not to move to Chicago after all because of the weather. The thing is, I really can't do certain things. I do help my boyfriend carry heavy furniture, for example, but my hands are in excruciating pain for 30+ minutes afterward. I do turn on my car in the morning and drive to work, but it takes a while for the heat to warm up and the whole time I can't feel my hands or if I can, it's because they're in pain. I've been hospitalized due to my condition and now I have a fear of needles I never had before.
The truth is, I'm terrified. I'm terrified when my chest hurts or I cough too much or my finger hurts like I have a cut but I see nothing or if I do have a cut and I think it'll get infected or if I have an infected cut and I think I'll eventually get a bone infection or if I do get a bone infection that I'll have to be hospitalized or if I'm hospitalized I'll have to get a pick line or if I get a pick line I'll have a bad reaction to every single antibiotic they give me or if I do have a bad reaction I'll have to get surgery... You get it.
The
first time I let someone see me warm up my hands with hot water was
really emotionally intense because warming up my hands with hot water is
very private for me.
I've only cried over my condition in front of exactly one person. On
the outside, I look like a able-bodied person. I don't continue to
snowboard or go running when it's cold out, it seems, because I'm lazy.
In fact, I've had people call me lazy for that very reason! All this
time, I'd rather people call me lazy than accept that I might have a
disability.
I am not disabled. But I do have a disability and it's taken me a little over ten years to admit it.
Knowing what I know about my body and experiencing what I experience with my body is scary. And I'm afraid. But I'm not asking for sympathy. That's not what this is about. This is partly for me to process this, but also...
Definition of ableism - discrimination or prejudice against individuals with disabilities
The ultimate reason for this post is ableism. I had never experienced it before because I never talk about my disability. I'm hidden and I've definitely been grateful for that for a long time. But is this a blessing or a curse?
If I were in a wheelchair this past ten plus years, there would be no question that I have a physical condition that interferes with my ability to perform certain tasks. People would treat me accordingly, or with prejudice, but people would know. As it is now, I look like a normy.
And I think this hidden disability thing is something people without hidden disabilities don't understand - it IS a disability. It's scary but it's a part of my life. No, it's more than that; it's a part of who I am as a person.
Someone I was friends with on Facebook recently posted an update on her medical issues. This was a normal occurrence, so I almost scrolled by it, but eventually decided to see how she was doing. She was doing fine, this and that, but the end of the post really irked me. Here, I quote,
At first I tried to be friendly and said that she would be fine because I've had a disease like Lupus for years and remember how fine I am? But then I started thinking about it and I couldn't stop thinking about it, so I said something despite all my instincts, I called her out.
What *does* worry me is when she noticed my toes turning purple. She said it's a sign of Reynaud's [sic] disease, which in and of itself isn't a big deal. I just have to keep my feet warm. What is a big deal, is that it's a sign of lupus. So I'll know in a week whether this is an endocrine issue or an autoimmune issue. I really hope it's the former...
For a few years now, it's been a normal occurrence in liberal communities to remind people that if you're called out on your shit, be it racism, sexism, ableism, what have you, you say thank you, apologize, and let that be that. So, since I'm liberal and she's liberal I just assumed that's what would happen and everything would be fine. Well, you know what they say about assuming things.
I told her her post "kind of" pissed me off and that she was being ableist. She did not take it well. I thought maybe she didn't see how she was being ableist, so I broke it down for her. She did not take that well either and started insulting me. Well, I lost it and said some stuff I shouldn't have said and ended it by saying, "Get over yourself. I'm out." And I unfriended her. Needless to say, it did not go well. But what does need to be said is that she was wrong and just because my disability is hidden (most of the time) does not mean it doesn't exist. I don't think she got that.
If you don't see how what she said was ableist, and this is what I said to her, think about it this way. If you spent your whole life in a wheelchair because of some sort of genetic disease or something, you have to deal with that every day of your life, it scares you, and it's a part of you, and then one day you see someone post about how "worrying" it is that it might happen to them, implying that it's a really bad thing, wouldn't you consider that to be ableist? I would.
But that's not the only problem and that's not the only way this was ableist. The thing is, if you use someone else's life experience to scare your friends into being concerned about you, that's ableism. And make no mistake, the only reason to post something like this on Facebook is to get pity and scare-concern from friends. And make no mistake, too, she was using my experience to get that pity and scare-concern. Not only is that fucked up on it's face, but she objectified my condition and by extension, me. She did the opposite of fetishize it, but I'm not sure that word exists. She did revile and deride in my condition's face and in extension, mine.
I'm not perfect. I'm sure I've said and done things I shouldn't have said and done to offend someone. In fact, I can think of a time that happened! And you know what I did? I apologized and listened.
From now on, let's apologize and listen. It's the only way we learn.
This is the first instance I can remember where I read something and it read like ableist discrimination against me from someone I know. That's why I've talked about it so much here. I'm sure it won't be the last time something like this will happen and it probably wasn't the first.
At least I learned something important about myself. I've learned that I have a disability and I've always considered it to be one on some level. I'm learning to be ok with it, but since it's a progressive disease, it doesn't get easier over time. It gets harder.
Here's the lesson: Yes, it's scary, but it's not yours.
