Me and Disability

These thoughts were written by Claire, one of our 2020 summer interns. The opinions expressed herein do not reflect those of Civitas other than respect for the value of open dialogue.

The summer before I started high school, I fell down thirty steps. I was coming out of my dentist’s office, and already late to a percussion lesson, moving too quickly and carelessly in bulky new shoes, and I just….. fell. I went to the ER, where I found out that most of the tendons in my neck had snapped. I had a concussion and had to wear a c-collar for six weeks.

I fell in early June- about two weeks after I’d purchased my Six Flags season pass- and I thought I’d have plenty of time to recover before starting high school. I thought my concussion symptoms (headache, nausea, paralyzing migraines, inability to stare at a computer screen, and lack of focus) would resolve. But by the time I saw the neurosurgeon for my follow up (six weeks later), I didn’t feel any better. High school was mere weeks away, and the anxiety of starting school, compounded with the pain from my injury, worsened my symptoms. I’ve always been a high-achieving student, and I knew this injury would prevent me from learning and maintaining my grades. 

For both freshman and some of sophomore year, learning and participation in school was difficult. Sophomore year I missed 14 days of school due to illness, migraines, or nausea. Before my injury, I had almost constant headaches and pain, but I didn’t think anything of it. It was just something I lived with. I can remember being called a wimp in elementary school because even the most minor injuries hurt a lot. I never took any risks with my body because I was extremely scared of pain. The injury increased my symptoms, and their severity, tenfold. I knew that I couldn’t function at the level needed for school and my extracurriculars, so I decided to seek help. After two years of being passed around from specialist to specialist, going to a concussion clinic, going to a pain clinic, and being tested for every disease under the sun, I was diagnosed with Mast Cell Activation Syndrome (MCAS), chronic migraines, Amplified Musculoskeletal Pain Syndrome, and chronic fatigue. 

I won’t lie; I really don’t understand what Mast Cell Activation Syndrome is. I have tried to learn more about it from four people who have it, the doctor, and the internet, and I just don’t get it. The way that I’ve learned to describe it to people is to say that it’s like being allergic to everything. Your body reacts to stimuli like you’re having an allergic reaction, but you might not actually be allergic to that stimuli. The reactions vary from person to person. Not everyone hyperventes randomly and going into anaphylaxis. Usually, I can’t tell when I’m having a reaction. I just get really tired all of a sudden and my body starts to hurt. Whatever I react to makes my muscles and body inflamed. 

The treatment for MCAS is simple and complex. The hardest part has been figuring out what triggers my reactions, since I don’t really know when I’m having them. It’s likely that I have food triggers as well as environmental triggers. I’m currently in the process of becoming dairy-free, as it seems that dairy is one of the main triggers for me. Every time I eat it, I feel the need to lay down and rest for some time. I know that sudden temperature changes trigger my symptoms as well. When I walk into a heated building during the winter, I get a massive migraine and feel like my teeth are being pulled up into my nose. However, there are many more triggers of which I am unaware. This affects my performance in school and my functionality in life. I can’t avoid everything that triggers me and still live the life I want. 

Living with MCAS is difficult, but manageable. I have to ration my energy and really be on top of my priorities. I have to take more time to rest than the average person. I have to be organized and try to mitigate risks, like putting myself in a place where I could be exposed to a reaction trigger. School is really hard. I’ve had to adapt my lifestyle around my illnesses to ensure that I am able to do the things I want to do and have capacity for. There isn’t a silver lining to having to drastically change my lifestyle over two years. I liked the way I was living before. But I also like the way I’m living now. I feel better, and I’ve come to terms with my limited functionality. I live differently and can’t do as much as other people, and that’s completely okay! I know that I can control what I can control and only that, and I’ve made my peace with that. At the end of the day, I don’t want pity because I have chronic illness. It sucks, but I have to live with it. I don’t really have another choice.