“Wait, you can’t have Ehlers-Danlos syndrome… can you?”
So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for its extensive research. I for one, am very grateful to those who dedicate their time and effort to make mine and others’ lives just a little bit more bearable.
I am also lucky to have not only a great GP but a few good ones to whom I can use as backups when my regular GP is absent. They always do what they can to help and never question my condition or my sanity. What I do get questioned about, very often, in fact, is my weight, and going by the EDS Facebook groups I’m in, I’m not the only one.
I have been told by one doctor, who very rudely snorted his response that I couldn’t possibly have EDS, because “those people” are tall and slim. After that comment I could only hear certain words, “pain is associated with your weight”, “EDS causes weight loss”, “unable to hold down food”, “depressed”, and “manifesting symptoms”. I don’t remember the rest of what he said because in my head I was screaming at him. In reality, I felt an inch tall and fled his office in tears, without even discussing the problems I had gone there with.
On the way home I questioned everything, was the pain because of my weight alone? Was it true that I didn’t have EDS after all? Was I actually in pain 24 hours a day or was it all in my head? He was the expert after all, right? At that moment I doubted myself and hated my life.
When I got home I called my eldest daughter, who is also one of my carers, and I sobbed my fat little heart out. After begging her not to go and confront this doctor, she came round to my house with my young grandson so that I could give him a cuddle (this always makes me feel better), and we could talk properly over a cup of coffee. She even brought those with her.
We talked, and cried. We laughed and cried some more. I felt rotten but after an hour or so, my daughter, who has read up enough on EDS to be able to help me, calmed me down and put things into perspective for me. She also encouraged me to contact The Ehlers-Danlos Society for confirmation that he was wrong. They, as my daughter suspected they would, confirmed it.
Thankfully I kept this in mind, when a physio who worked in a now-defunct hypermobility clinic, looked down her nose at me, dismissed all of my pain as being weight-related and in her report even downgraded my condition given by their own rheumatologist, from hypermobile EDS (hEDS) to “Generalised joint hypermobility, with some pain”. Was I angry? Yes, I was. Did I complain? Yes, I did. Did it help? No, it didn’t. Did it beat running out of the room crying and showing the bully they’d won? Hell yes!
Unfortunately, despite desperately trying to lose weight, the medication and lack of ability to exercise still warrants ignorance and I still have anxiety attacks when I have to see a consultant I don’t know.
Don’t get me wrong, most are fantastic and treat me like a person, but some still treat me like they’re going to catch the fat bug from me. I can tell now as soon as I meet someone how the conversation is going to go, and I have the same answer to each one who tells me losing weight will cure my pain – “oh wow, that’s amazing that losing weight will cure my genetic condition.” I like to hope that this makes them realize how insensitive their comment has been.
We have enough barriers when it comes to getting help with managing EDS, and those of us who are overweight appreciate that losing weight will help with some aspects of our condition, but the chronic pain we have in all of our muscles and joints is because of faulty collagen.