Rare Disease Day- But you don’t look sick


For a lot of people today is a day that doesn’t come round often enough. It’s a day for people who spend the majority of their lives fighting the battle to be recognised and taken seriously, or just explaining over and over again exactly what is wrong with them. My battle is being a sick person stuck in a totally normal looking body (apart from my arms that look er, a bit backwards and circus-like). I go to work every day, I go on holidays, I go out with friends, have a boyfriend, I exercise, eat out, get drunk- I do pretty much everything ‘normal’ people do. The catch is, I often do it feeling like utter crap.

“But you don’t look sick.” Yeah thanks, I know, but I am.

Rare disease day covers thousands of different conditions and quite often, they aren’t truly rare, they’re simply rarely diagnosed due to lack of awareness and  often the dots haven’t been joined yet. There are few records of diagnosis, few doctors to provide adequate treatment and few chances to raise much needed awareness and funds for reasearch. Mine is Ehlers Danlos Syndrome, which you might have read on this blog before (sometimes I do moan, and it’s usually because I’ve spent the day limping). It’s basically bad joint pain, dislocations (hips and shoulders), chronic pain (every single day, in totally random body parts), varying degrees of fatigue, swelling, fragile veins and easy bruising. I have it lightly compared to some. And that’s why today is so important.

A lot of people out there with a rare disease suffer almost entirely alone, even more so if it’s an invisible one. When you can’t see the affects of something, it’s obvious that people will forget, and you can’t blame them. My family forget, my friends forget, and now I’m older and more in control of what’s going on, I try to forget. I have the ability and luckily the option to pretend a lot of the time that nothing’s going on. It’s only on days when I can’t ignore the pain or something has happened with a joint that means I’m limping or injured that I think constantly about being ill. The only outwardly physical mark on my body is my feet, where blood is pooled and no one knows why or how or what to do about it.

But like I say, I feel like I get off lightly. I can go about my life and hold down work and have a social life and progress as an adult, even though it would be nice sometimes if people considered I don’t feel great 90% of the time, I can’t really complain. Chances are you know someone with a rare disease. Or an invisible one- and that includes mental health. I would love to spend more of my time and more of my energy raising much needed awareness and funds for Ehlers Danlos, but since I don’t have much capacity to do so these days, Rare Disease Day is a nice chance to shout once a year that we all need a little attention some times.

If you have a rare disease or feel like you suffer from a condition that could use more of a voice, don’t let the last day of February pass you by next year. The more people that make a little noise, the bigger the chance of being heard.

2 thoughts on “Rare Disease Day- But you don’t look sick

  1. “But you don’t look sick” or any variant of that is one of the rudest, most trivializing things you can say to someone who is sick. I had a triage nurse say this to me when I was in the emergency room. No one knows how much someone is suffering if they aren’t in their shoes. It’s attitudes like this that prevent people from taking the diseases of others very seriously and that can really harm someone!

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  2. I suffer with depression and from an outsiders view it can be hard to see that anything is wrong with me because it is not physical. I am expected to live a normal life and sometimes find it so difficult to do so!

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