You Are Not Old Enough to be that Sick
by Lisa Copen
I was twenty-four years old, enthusiastically living in a new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors each week, explaining my significant pain, it felt much longer. Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.
Despite the terms "chronic" and "forever" I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn't wearing heels to work anymore, making me look less professional.
"Encouragement" was quickly tossed around, like "You're too young to feel so badly!" Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They'd laugh and say, "You can't have arthritis yet!" Those who attempted to sympathize compared my weary body to a sports injury they had. "I have a touch of arthritis on my knee cap from football in college. It's not fun when the rain comes, but you just have to keep pushing and not think about it." Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.
When you are diagnosed with a chronic illness while in your twenties, all typical decision-making it thrown off schedule. This time in your life should be about choices for areas of education, a career, relationships, and even where you will live. Instead, all of these decisions are put on hold and you must make more life-changing choices - fast! How do you accept, or not accept, the diagnosis? What medications should you take? What is the risk of side effects and are they worth it? How do you find the best doctor? We get a fast education on how to read lab test results, what forms of alternative treatments to try, and even when to let yourself have a good cry versus when to just bite your lip and hold the tears back.
As I tried to make each decision based on careful research, instinct, and "worse case scenario" situation, hearing someone flippantly say, "You're too young to have that illness" felt like a slap in the face. Though a simple comment, my heart felt it deeply, as if they assumed I was too ignorant or accepting of the doctor's diagnosis. They implied that I needed to be more assertive and get a the "real" diagnosis of an illness that could be cured in a few weeks with a pill. After all, I couldn't really be that sick, because I "looked so good."
Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of 'Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,' In her book she explains, "However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who 'should' look and act healthy - fear, ignorance, intolerance, to name some."
The onslaught of advertisements for prescription medications have somewhat educated the general public that illnesses such as rheumatoid arthritis and fibromyalgia are legitimate illnesses. The downside is, however, that everyone considers himself an expert, and they often make their assumptions based on the visuals of those same commercials: people with debilitating illnesses miraculously playing tennis or running down the beach. While some people may find remission due to the medications, most of us are just glad to be able to get out of bed, dress ourselves, and drive a car. The commercials fail to educate that, despite an illness being controlled, they are still accompanied by tremendous daily pain.
With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.
