Most people’s immune systems protect them. Mine? It attacks me as if I had insulted its mother. Between Eosinophilic Fasciitis and Rheumatoid Arthritis, my body has decided it wants to start a war with itself because it’s bored.
Let’s combine rare diseases and college. Do you know what you will get? A main character in a reality show. It shall be called “Survivor: Autoimmune Edition.” Every episode is unpredictable and unhinged. One day, I feel like a normal 21-year-old and the next, I feel like I borrowed my joints from someone’s grandma.
Eosinophilic Fasciitis sounds like something out of a sci-fi movie, but really it just means the tissue under my skin gets swollen and stiff because my immune system can’t mind its own business. The fascia, which is kind of like a spider web that holds your muscles together, gets tight and sore. That makes my arms and legs so sore that some days I have to have help just to get out of bed. It is rare, confusing and honestly feels like my immune system’s idea of a prank.
Rheumatoid Arthritis is another fun twist my body decided to add to the mix. It is when my immune system gets even more dramatic and starts attacking my joints, thinking they are the problem. The result is swelling, pain and stiffness that mostly affect my hips, fingers, elbows, knees and ankles. Some days they puff up and ache so much that even simple things, like walking across campus or holding a cup, feel like a full-body workout.
College life with rare diseases is kind of like taking an advanced biology class you never signed up for. I have learned more about inflammation, immune systems and connective tissue than I ever thought I would. It is like my body is the subject of a never-ending science experiment, except I am both the researcher and the test subject. Some days I wake up ready to conquer the world and other days I am just proud of myself for showing up to class in something other than pajamas.
People ask questions all the time, especially when they see the discoloration on my arm. I have heard everything from “What happened?” to “Were you in a fire?” That is when I tell them my favorite story. The infinite T-Rex. Yes, a T-Rex. It bit my arm and poisoned me, then secret laboratory people came out of nowhere and took me to their hidden lab. They gave me an antidote and tried to erase my memory, but clearly this was their first time doing it because it did not work. Now I know about the T-Rex, where the secret lab is and I still have the tooth to prove it.
In reality, it was just a biopsy. But honestly, the dinosaur story is a lot cooler than trying to explain what Eosinophilic Fasciitis is. Most people don’t know what that even means and I can’t really blame them. It took me months to learn how to pronounce it correctly and it still feels like a word that should earn me extra credit in a spelling bee if I weren’t dyslexic.
The funny thing is, even though it sounds serious, I don’t take myself seriously. I have learned that humor can be the best kind of medicine. When my hands hurt or my skin feels tight, I try to find something to laugh about. I have learned to celebrate the little victories, like being able to open a water bottle without asking for help, getting through a day without feeling like I am 80 years old, or just deciding to take a nap and try again later.
Even though living with rare diseases can be hard, I like finding humor in it. My body might be confused, but it definitely keeps life interesting. I choose to laugh about it because it makes everything easier to handle. I might not have control over my immune system, but I do have control over how I tell my story and how I choose to live with it.
At the end of the day, I am just a college student with a dramatic immune system, a good imagination and a scar with a great story. At this point, I roll with it and maybe even write a column about it.
