I was just twenty-four years old and living over one thousand miles away from my family when I faced the diagnosed of rheumatoid arthritis. In barely a month I visited doctors more often than I had in years, and eventually found one who would listen to me explain my symptoms. A few days later I had a diagnosis.
As with many people, having specific terms like "chronic" and "forever" attached to a painful condition can simultaneously create emotions of fear and relief. At least something describes the chronic pain. There were not many friends, however, that understood or participated in my enthusiasm for a diagnosis. And the office managers at my place of work were not concerned about my pain level, but rather about when I would be able to get back into some heels to keep the office looking professional.
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.
When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life. Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we're at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.
I tried to make each decision based on thorough research, a bit of instinct, and "worse case scenario" situations. So when I heard someone facetiously say, "You're too young to have that illness" it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor's diagnosis and get "right one" that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, 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 ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it's true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.
With any chronic condition or illness, nearly 1 in 2 which are invisible, there will be people who will always be skeptical that about the amount of impact your illness has on your life. When you are in your twenties or thirties, it's even more difficult for them to wrap their brain around the fact that you feeling better requires a great deal more than a positive attitude of a bit of exercise.
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