By Claire Forst
Reprinted from Loose Connections Vol X Number 1
People who have chronic illnesses are in two distinct categories: those who look sick and get all kinds of sympathy (wanted and unwanted), and those who, no matter how they feel, just don't look "sick". How do we classify "looking sick"? Well if someone is looking pale and wan, or seems to be in pain, we ask them how they are feeling and if we can do anything for them. On the other side, is the person who may very well be in constant pain or at least discomfort, but is able to walk and talk and carry on with their daily activities, no matter what the cost is to their physical or emotional health. These people are almost never asked how they are feeling because if they look "well", we assume that they are fine. Most times, they aren't fine, however, and it's about time we acknowledge this.
Our daughter has an unknown type of EDS. She is always in pain, yet as a child, she is always striving to keep up with her peers so as not to be different. To look at her, you would not say she is a child with a medical problem, unless you see her when the pain overwhelms her and she cries on her bed. Even her doctor, a kind and caring person, was not tuned into the degree of discomfort she endures each day until he heard her scream in pain one morning. He was shocked. Not because he doesn't care or didn't believe her, but because she "doesn't look sick". Recently, she has gone through a bad time with her legs, and I sent her in alone to talk to her doctor. We are grateful that she is a very articulate 8-year-old who can make her position known in no uncertain terms. They were in the office for quite a while, and when they came out, his whole attitude was changed. No longer was there the "how can she be in such pain when she gets around and looks OK". What we saw, was a true understanding of the life our child leads and how hard she works to be a "regular" kid.
The same principle applies to everyone, no matter what age. When we look sick, we may be accepted with all of our limitations. If we are bent over, someone may rush to help us. If you are visibly handicapped, people may look away, but most people would offer necessary assistance. Most people with EDS look just like everyone else. They may limp, or have visible skin changes. But many people have scars, and that doesn't make them sick.
We must make the general public and members of the medical community aware that the way we look is only "skin deep". The way we "feel", both emotionally and physically, is the bottom line. So the next time you ask someone, "how are you", please take a moment and really listen to the answer; you can be sure that your concern and caring will be appreciated.