Thursday, April 12, 2012

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.


Little Miss Autoimmune


  1. Excellent story I live with DERCUMS Disease and many times I hear U don't look sick .!!

    1. Hi Bdoor, thanks for your comment :-) One of my close friends has Dercum's Disease. She has a blog "In my body" where she talks about Dercum's and her art work. You might like to check it out: