When Joking About Chronic Illness Is My Coping Method
During a conversation with my best friend, she said, “This is all new to me.” Her comment completely caught me off guard. On one hand, I thought, Have you not been listening to me?! On the other hand, I thought of all of the excuses I give about not hanging out. I am a professional exaggerator and queen of saying ridiculous things. In order to get people to take me seriously about my chronic illness, I’m going to have to actually come out.
I’ve struggled with the same symptoms for as long as I can remember. I fainted at my kindergarten Christmas concert. Who remembers that? I made jokes about the way the nurse carried me away. I was trying to make light of my own symptoms by the time I was 5. My mother took me to the doctor and she was told I was fine. I was tested for growth disorders, muscular dystrophy, cystic fibrosis. Every test came back clear. So I made jokes.
By the time high school started, I was even more tired and sick. I told people I was skipping school. I mean, I skipped school a few times, but these were few and far between. I was sleeping. I never went to a full week of school after ninth grade. I was not a badass, I was sick.
As an undergraduate, there were classes I literally never went to. I emailed in my work. I told people school was so easy that I didn’t even have to go. School has always been easy for me. Do you have any idea how organized and on top of everything you are when you have a limited amount of energy? No action can be wasted. This translates to stellar academic performance. You also have to be creative to come up with constant excuses!
Graduate school presented me with the best excuses. I can’t go out because: I was up late studying, I have to write a paper, I have to study tonight, I have to write a paper tonight, school was so stressful that I need to vegetate… I can write a 20-page paper in one hour. I don’t study. I never have. I have learned to remember things after hearing them or reading them only once. It’s a skill I had to learn in elementary school. When you are absent all the time, you have to remember everything you learned in class, without repetition, and do a lot of learning from reading on your own.
When the opportunity to move for an internship arose, I jumped on it! I wanted to be able to lay in bed, uninterrupted from 5 p.m. Friday night until 7 a.m. Monday morning. And no one would know! And that’s what I did! The sad reality is that I thought a “year off” from making excuses and being social would heal me for once and for all. It didn’t. I made jokes about becoming a Golden Girl. I called my pajamas “house clothes” because I wear them when I’m in the house. I made jokes about “no shower Sundays.” There are actually a lot of days I don’t shower, because I can’t. If I use up too much energy on showering, I won’t be able to get through my day. I dreaded coming home. At this point, I knew that I could not hide my secret any more. I had tried everything. Diet changes, eliminating everything I’m allergic to (dearest peanuts — I miss you so much), and six months of consistent exercise.
In hindsight, I can’t be mad so many people did not take me seriously. If I’m sneezing, I like to say that I almost lost an eyeball. If I have stomach trouble, I like to tell people I pooped my pants. I feel better when I make someone laugh. It is easier to say something and then ease the tension with a joke, at your own expense.
So now I’m coming out. I’m sick. And I’m not going to get better. Getting a diagnosis was the hardest thing I have ever done. I went to one doctor and said, “I’m not leaving here without a prescription. I don’t care what it is, you have to do something.” I had to cry. I shelled out hundreds of dollars for medical tests. I went to specialists two or three times per week for over a month. I researched endlessly online.
I have Ehlers-Danlos syndrome. I’d really like to make a joke about how I’m falling apart at the seams, but it’s not funny. Laughing will always be my coping skill, but when I get serious, I all I want to hear back is, “I believe you.”
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