I have to use a wheelchair anytime I’m going to be very long in a store that has no benches. Not sure if it’s from the ice I slipped on last year or what. I HATE the smirk! The smirk is because they go to stare and notice I’m big and assume I’m so big I can’t stand on my own – um ok? Much larger people than I stand just fine. So they do the skim over smirk.

Had to come read your blog after your comment on FB — no it’s nothing like I was reading – DEFINITELY!! I like your blog and am glad I could learn a little more about the now you. (um – hope that’s not as weird as it sounds!)

I was looking at the rare-disease-day photos on Flickr and reading about all the different diseases that the people on these photos have. I clicked the link below your photo and have been reading some of your posts. I think it’s great that you write about what you are dealing with. I’m sure it helps you to put all this into words and I’m sure it can help others as well – it’s always comfort to people to know they are not the only ones dealing with a certain disease or issue.

I have a rare disease as well, Emery-Dreifuss Muscular Dystrophy. Like with your disease it leads to bunch of different problems. Muscles, spine, joints, heart, lungs, stomach,…
But unlike you I have some visible symptoms. After I needed a surgery for scoliosis as a kid, I can not bend my back at all and I have a scar on my neck from the respirator that everyone notices. Most people just assume that I always sit straight because I was brought up well and many stare at my scar. My other big scars I usually hide.

However, the main visual symptom is how skinny I am. I’m 22 years old and I weight less than 40 kg. I’ve been told by a specialist that it’s normal for people with muscle diseases to be very skinny. But oh, do people stare! I have had problems with weight (i can not put any on) since I was 8 years old and it always shocks me how rude people can be. Not only staring but even adults pointing and whispering. As a kid I completely stopped going to swimming pools and in the summertime I’d always wear long sleeves and trousers – even if the weather was way too warm for that. At buffets there is usually at least one stranger that urges me to put more on my plate.
But the worst thing, the absolute worst is the school thing. At almost every school I’ve been in, secondary school, high school and even university – some people always assume I have anorexia. (Even in the high school where I ate a big plate of fries for lunch every single day! – what kind of anorexic would do that?) Sometimes some very strange stories have accompanied these rumors… I was lucky enough to get to hear some of the ones from high school..
This makes me so so so mad. That people think that I’m doing this to myself is just something I can’t cope with (I am aware that anorexia is a disease too but I still hate the fact that people assume I have a mental disease). I’m so conscious about the fact that most people I meet assume this that it has effected my every day life for more than 10 years.

So when people ask what’s wrong with me, I get so happy! I love when people ask and give me a chance to explain what really is wrong. And love the fact that they don’t just assume but take the trouble to ask. I don’t care if it’s a friend or a complete stranger. I want people to know about rare diseases and will gladly try to explain to anyone who asks.

Don’t stare, please just ask.
or… You can stare if you ask as well!

Good luck with everything!
-Salóme