For those who don’t know me, I have been chronically ill for almost eight years now with Rheumatoid Arthritis that “morphed” into Lupus, Fibromyalgia, Chronic Fatigue, etc., etc. When I was a teenager I got my first Autoimmune disease, Ulcerative Colitis, and in my early twenties developed Costochondritis.
Having lived with so many diseases and being sick since 2003, I have had to come to terms with my health, but I still have people around me, friends and family, who have not. They still do not get it.
I am far from alone in dealing with this as it is a frequent topic on the message boards of a website I love, But You Don’t Look Sick. And I know I definitely do not have as many problems with those around me as others do. I read about teenagers who are sick, whose parents think they are faking, young people who are thrown out of their parents’ homes because they are “lazy”, and even older people who still feel the doubt, anger and frustration from their friends, relatives and spouses. Sometimes chronic illness can even lead to divorce as the well spouse can no longer deal with supporting his or her sick spouse.
Why so many difficulties? Why so much conflict? Why so many awful stories from people with chronic illnesses about the people who surround them?
After having chronic illnesses for some time, I believe I have an answer. If one does not have a chronic illness, the concept is totally foreign. When most people get sick usually one of two things happen; they get cured or, unfortunately, they die. The people who have chronic illness most times do neither. They just live they whole lives…sick. And their lives may not even be shortened by their conditions, instead living a long, drawn out life of suffering with a lot of bad days and some good ones.
People with chronic illness are the people who are caught in the middle, and I think that is a hard concept for well people to wrap their minds around. So how do we sick people get those well people in our lives to understand what we are going through? I think we need to understand why it is that they do not understand, and we ourselves need to understand them first. And then explain to them what it is like for us. Whether we use The Spoon Theory or something in our own words, we need to talk to them and they to us. Especially as we observe National Invisible Chronic Illness Awareness Week, it is time for sick people and well people to come together, support and understand EACH OTHER.