If you live with an invisible chronic illness you know first hand it's not easy, but if you are diagnosed with one as a young adult it has an entirely different set of challenges and emotions because, after all, you "look so good" and seem too young to be that ill.
People! You are Just Being Lazy
by Lisa Copen
At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor's visits, I finally found a physician who listened to me explain my symptoms and in less than 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.
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.
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, 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 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 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.
Instant download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you <a target="_blank" href="http://www.restministries.org/res-ezine_ill.htm">subscribe to HopeNotes</a> invisible illness ezine at Rest Ministries. Lisa is the coordinator of <a target="_blank" href="http://www.invisibleillness.com">Invisible Illness Awareness</a>