Over the holidays I was at a party with friends from high school. I had a hard time getting into my friend’s house as there were steep stairs to climb. And lots of ice. At the party I noticed a former classmate who has Lupus. She was not carrying a cane like I do. I had a rare moment of self-doubt and thought, Am I behind? “Kay” doesn’t need a cane for her autoimmune disease and I do. Kay has had Lupus for ten years; I’ve had Myasthenia Gravis (MG) for five years. I came to my senses and remembered that we’re not in a race. We’re both just trying to survive.
No One Size Fits All Disease
Almost everyone living with chronic illness has heard some message from someone insinuating that your illness isn’t that bad because So-and-so who has [insert your disease here] graduated from Harvard, became a CEO, and competed in the Olympics. Basically, did everything but become President. I know that some people who say these things mean well and are trying to help. While it’s important to have heroes with chronic illness, it’s also important not to live life by someone else’s expectations. There is no one-size-fits-all disease. People are different, and that’s okay. Confronted with comparisons, what can we do?
4 Suggestions for Self-Care
1) Live life at your pace: My sophomore year in college I transferred from a school with semesters to a school with quarters. That’s like going from 15 mph on a treadmill to 75 mph! In fact, I got a D+ on my first exam. Over time, I developed a skill for surviving my Bipolar Disorder. At first, I took three classes instead of the regular four when I was depressed. Then I got stronger and was able to take a full load. As Sinatra says, “I did it my way.” Whatever your condition(s), live life at your pace. Before I got Myasthenia Gravis (MG), I already had a hard time juggling Polycystic Ovarian Syndrome (PCOS) with bipolar disorder. The pain, the number of meds I was on, and the unpredictability of my ovarian flare ups made it hard to do simple things like standing up straight at times. I remember people saying, “Come on. You should be able to drive. PCOS is just like having your period.” What! That’s like comparing high school detention to waterboarding.
2) Don’t define yourself by other people’s accomplishments: In college, I competed on Speech Team. Most of my teammates seemed perfect. They held down jobs while travelling every weekend, won a lot, and graduated summa cum laude. Some of them even had health conditions. I graduated cum laude with two majors and won twenty titles. I was, however, not able to hold down a job in college, one of my goals. After getting MG, I was not able to go to graduate school. For now that dream is on hold. The truth is: There are things I can do that other people (healthy and sick) can’t do. Likewise, there are things I cannot do that other people can. The things we cannot do don’t define us. But our efforts despite our limitations do.
3) Get rid of negative influences: When I got out of the hospital at the age of 24, I was bedridden 90% of the time. The hospital’s physical therapist couldn’t answer any of my questions like how to shower or put my shoes on. She kept insisting that I was “doing just fine” because she had an MG patient who was bedridden 100% of the time. Of course, that’s tragic. But I had dreams and I had to at least try. Had I kept her around, I would be drinking Ensure and watching 24/7 Cable News all day. Everyday. Just as it’s important not to listen to people who hold you to unrealistically high standards, it’s also important to avoid being around people who only have low (read: bleak, hopeless) expectations for you. Keeping hope alive despite constant pain and fatigue is difficult; we don’t need detractors.
4) Find positive people: There are healthy people who can empathize with us. When I’m in pain I talk to friends who will listen. (During hard times, I stay away from Debbie Downers.) I’ve also found community in friends with Lupus, MG, Epilepsy, Cancer, CRPS, and Muscular Dystrophy.
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