National Invisible Chronic Illness Awareness Week

And be sure to visit our main web sites for National Invisible Chronic Illness Awareness Week and our Invisible Illness Week Blog - we post messages all year long!

"But you look so good!"

"I can tell you must be feeling better. You look great!"

"I'm so glad you were able to come. Thank goodness you finally are getting some relief."

To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that you must be feeling better or you wouldn't be out of bed. Those of us who are ill, however, understand that if we stayed in bed until we felt better, we would never leave the bedroom and we would miss out on life.

So we get out of bed. We put our energy into finding something to wear that doesn't clash too badly; something that looks acceptable, despite the wrinkles. We search for the lipstick that we used last week. We dig through the closet looking for something that resembles a shoe. And we go on. We go out.

To read more visit the NICIAW web site at http://www.invisibleillness.com and look under "articles."

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.

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.

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 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 you accept (or do not) accept the diagnosis? What medications should you take? What is the risk of side effects and are 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.

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 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.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly "as is" including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.