Friends of ASCCA: Adapting to life during a pandemic

When someone meets me for the first time, it’s obvious to them that I have a disability. My curved arms and electric wheelchair are pretty conspicuous, and save me the trouble of figuring out the time to informally disclose my Arthrogryposis. But my disability affects me in another way that isn’t visible, and sometimes that makes this condition harder to accept and understand. The pandemic has been tough for me mentally, leading this condition to affect me more than ever. This is why I want to share more about it, and help everyone understand what people with invisible disabilities like mine may be going through right now.

Aside from my physical disability, Arthrogryposis Multiplex Congenita (AMC), I was also born with another condition called Cyclic Vomiting Syndrome (CVS). CVS causes me to get very sick in response to emotions like excitement and stress, which is really frustrating because I either miss out on cool stuff, or get sick on top of already being overwhelmed. When I was a kid, I would go through episodes that caused me to be hospitalized multiple times a year. Luckily, lots of people with CVS grow out of these episodes, and I haven’t been hospitalized in about five years.

Now that I’m older, I’m having to adjust to new symptoms of CVS that I didn’t have so much as a kid. Chronically feeling nauseous, fatigued and having a headache, random fevers, and migraines have replaced them. From this description, it probably sounds like more than a fair trade. But adjusting to more chronic and invisible symptoms has actually been very difficult. Lately, I feel sick anywhere from two to five days a week, and it can prevent me from doing even simple things. Looking at a screen or any light, sitting up, and even talking can be difficult. But often, I feel like people don’t believe me when I explain my CVS, or take me seriously when it keeps me from doing something.

I understand why it’s hard sometimes to accept invisible disabilities like my CVS. I definitely didn’t realize that migraines and the other symptoms were going to be so hard to handle. I mean, I’m a tough kid. If I’m not hospitalized then I should be fine, right? But just because symptoms aren’t visible, doesn’t make them any less serious. I actually feel like CVS is affecting my productivity more than before, and believe it or not, more than my AMC ever has.

But if there’s one thing people with disabilities excell at, it’s adapting. I’ve learned to do so many things differently than others, and even new ways to do those things as I grew. I know that in time, I’ll adapt to work with how CVS has changed my body. For now, I keep the blue light and brightness down on my iPad all the time, I wear sunglasses indoors, and I’ve stopped eating certain foods. These aren’t 100% effective though, and there are still many days where I can’t do much of anything, sunglasses or not. So in the meantime, I just hope everyone will ride this out with me, and respect my new limits and adaptations. I know we’re all having to adapt to new lifestyles right now, and I hope you’re all staying safe and keeping others safe. These are hard times, but if there’s one thing I’m sure of, it’s that we will adapt.