I was twenty-four years old, enthusiastically living in 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 a 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.
Though some people wouldn't want any illness attached to them that had the descriptive words "chronic" and "forever," in an odd way I experienced relief to know what it was that accounted for the instant onset of pain and fatigue. After all, I wasn't dying from it. But few of my friends experienced any understanding about my diagnosis. The managers where I worked showed more concern about when I would be able to get my feet back into heels to keep the place looking professional. I was just hoping I could walk each day.
They quickly flung the words, "You're too young to feel so bad!" They always confused rheumatoid arthritis as being related to typical arthritis their grandmothers suffered from, exclaiming, "You can't have arthritis yet." Some tried to sympathize, comparing my fatigued body to a sports injury they had dealt with. "Oh yeah, I have some arthritis on my knee from football. It's not fun, but you just have to push through the pain." Oftentimes, the comments were accompanied by the wave of a hand or the rolling eyes.
A diagnosis in your twenties throws off all the typical decisions one is making. Your twenties should be about deciding on an education, a career, relationships, and where you will live. Suddenly, most of these choices are put on hold. Instead decisions are about how you accept (or do not) accept the diagnosis, what medications to take, what the risk of side effects are worth it, and how to locate the right doctor. We learn how to decipher lab results, what alternative treatments to try and when to have a good cry versus when to just bite your lip.
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 deep, 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 is the author of a great book called 'Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,' 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."
The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.
With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you "look healthy" they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.
