Do you expect your friend with the Flu to prove it?
Do you expect your gran with a sore hip to prove it?
Do you expect your climbing friend with a tendon injury to prove it?
Your Dad gets heartburn, does he have to prove it?
Your child dislocates their shoulder, do they have to prove it?
Do you expect your Mum with a bad back to prove it?
What about your friend with depression, do you need a doctor’s note to believe her?
A perfect stranger falls over in the street – does it cross your mind that they could be faking it?
No. None of these people need to prove their illness. They are shown kindness and support based purely on them telling you what they are feeling. So, riddle me this – I suffer on a daily basis with flu like aches and pains, extremely sore joints and swelling, tendon injuries caused by joints popping out of their sockets. My acid reflux is horrendous despite being on the strongest meds for it. My back leaves me completely immobile at times. I stumble around constantly because my ankles roll inwards. I have on more than one occasion given serious thought to ending my life because of my illness… How am I any different to people who suffer from one of these illnesses? Why is it that as soon as you have something that people haven’t heard of or don’t understand, that they assume that “It can’t be that bad” but when someone has the flu on its own, we recognise that they are feeling awful? It’s infuriating.
The thing with EDS is that most people don’t get diagnosed until at least their twenties, if they are lucky. By this point, most of us have gone through a childhood of being labelled as “attention seeking” kids who constantly complain of something being sore. Remember that kid at school who always had a tubigrip bandage on? That was me. And guess what, I really did just wake up with a sore ankle/knee/elbow. I picked up every single cold/virus that was going around and missed more than my fair share of school. I suffered horribly with ear, nose and throat issues which all make sense now… Childhood isn’t all that fun when people think you’re just trying to miss school. It’s not much fun as an adult either.
I wish people could recognise the struggle that every aspect to EDS brings when it is just a single issue and when they are all lumped together with even more conditions like fatigue, hormonal issues and IBS… It’s not okay to doubt someone based on your ignorance. It’s impossible to fake being hypermobile or having acid reflux. I wouldn’t think it’s easy to fake fluctuations in heart rate or very low blood pressure. You cannot fake blood test results and you can’t “trick” a consultant Rheumatologist or physiotherapist into diagnosing you so PLEASE STOP DOUBTING MY CONDITION AND MY PAIN!