There is nothing more irritating and/or frustrating for someone with a chronic illness to hear than "You don't look sick". The comment is so prevalent for those of us with Lupus and other autoimmune diseases that a website with the name www.butyoudontlooksick.com was created by a person with Lupus. The website is used to educate people about Lupus. I think they've taken something negative and made it a positive. For many of us with chronic illnesses "you don't look sick" isn't always taken as a compliment most especially when it's said with a "prove your sick" attitude. After all we don't look sick enough to be disabled, to have a handicapped sticker, to not be able to work, to not get out of bed, and the list goes on and on. Well you can't tell if a person is sick by looking at them anymore than you can tell if a person is nice, kind, loving, honest, mean, dishonest, or evil.
That old saying about not judging a book by its cover really holds true for people with Lupus. For example the picture of my husband and I was taken in the midst of the worst flare I'd ever had. I could barely walk and I couldn't wear shoes. I had to wear little cloth slippers because of an unhealed ulcer on my baby toe. A few days after this picture was taken I was in a wheelchair. A day or so after that I was in CICU awaiting a femoral-popliteal bypass on my right leg. My doctor found a clot in my femoral-popliteal artery. The ulcer on my toe wouldn't heal because I had very little or no circulation in that leg. As you can see looks can be deceiving.
When you don't feel good you don't usually care what you look like - you just want to feel better. The next time you meet someone with Lupus or another chronic illness keep in mind that no matter how the great the person looks on the outside the inside of them could be train wreck. Keep that in mind before you judge them as not sick enough based on the way they look.
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