It is two years next month since I received my diagnosis of Ehlers-Danlos Syndrome (Hypermobility Type). Whilst that day marked the official diagnosis, I had already come to terms with the likelihood of being diagnosed, thanks to my physiotherapist and GP doing large amounts of research, to try and find out what the hell was going on with my body. I had naively thought that receiving the diagnosis would make my life a lot easier, with more doors opened to treatments and medical professionals suddenly understanding more about my body’s complexities. The reality is almost completely the opposite.
My treatment hasn’t changed. That isn’t a criticism: I have a fantastic physiotherapist (I’ve said this millions of times before) who knows my body almost as well as I do and she has gone above and beyond her normal duties on numerous occasions. Physiotherapy for me is a necessity. I need it to keep my body working as well as possible. Sometimes I resent it, because most average 24 year olds don’t need an hour of physio every week to keep their bodies moving and to try and reduce some of the ever present chronic pain. I have laughed, cried, fainted and vomited my way through these sessions: I am my physiotherapist’s longest standing patient. This is not an achievement that I am proud of, but it suggests why we have a close patient/medic relationship.
As for doors opening, entitling me to new and different treatments, that hasn’t happened. A few months ago, I was assessed to see if I was a suitable candidate for an inpatient rehabilitation programme and the nearest orthopaedic hospital to me. I didn’t pin my hopes on it, the aim of the programme was to reduce pain and try and speed up the healing of temporary conditions. EDS isn’t temporary, in fact, it is the opposite. EDS will and is getting worse and I will not heal or get better. I’m grateful for my good days because I know that they are going to be limited. I was given a provisional place on the programme, on condition that I stayed fit and healthy in the run up to the programme starting and reduced the pain relief that I was taking. Well, that plan went tits up. I lost my place, due to my shoulder having an on-going wobbly, causing the mumblings of further possible surgery to have my joint fused. Although the main reason that I lost my place was due to the spontaneous combustion of my right hip aka tearing the cartilage around the joint for the third bloody time. Much like the other two times, it has turned my little world upside down; I wasn’t able to work, I spent most days in bed due to pain and being so knocked out. Instead of reducing my pain relief, I have ended up increasing it and have added oral-morphine to my daily drugs regime (that is some good stuff) and it contributed to my mental health plummeting.
Unsurprisingly, my place on the programme was withdrawn and I felt like a complete failure. The only “cure” for my hip is to have surgery. Again. However, I’ve been told that I’m not fit enough and I don’t want surgery, so that is on hold for now or until my hip gives up completely. So, yes, I am in crazy amounts of pain, often a bit off my face on pain relief and in constant fear of my hip getting worse. I am forcing myself to carry on. I’m not brave for doing this, it’s something I have to do.
EDS is classed as a rare disease. It has become slightly more prevalent in the two years since I have been diagnosed. Roughly 1 person in 1000 has some form of EDS and more people have heard of it, as it is getting more press coverage. With this, however, the number of people self diagnosing themselves with EDS is rising. EDS is not the same as being hyper-mobile. EDS isn’t glamorous. It’s endless waiting lists, doctors not knowing what’s wrong with you, unexplained medical complications, daily dislocations – which become the norm, cardiovascular problems, gastro problems, respiratory problems, complications with your skin and blood…I could go on. It is not being able to do the splits or being able to crack your joints.
Self-diagnosing with the help of Dr Google isn’t helpful for anyone. It’s offensive and insensitive to those who genuinely do have EDS and it is potentially harmful to your own health if you do self diagnose without any medical input. The chances of being diagnosed with EDS are slim. It’s a rare disease ergo not that many people have it. Relying on webpages and assuming that you fit the criteria is likely to cause anxiety and worry, potentially for no reason. If the diagnosis of EDS was as simple as looking online, people would not need genetic testing, occupational health and physiotherapy input, haematology input, diagnostic scans, rheumatology input, not to mention years of being brushed aside. Self diagnosing belittles and takes away the legitimate struggling that those who have EDS go through every single day.
The nature of turning to Dr Google to find out what’s wrong with you can also lead to mis-diagnosis when there is something genuinely wrong. It’s unlikely, but there is a chance that you could have a totally different and unrelated illness, which you are passing off as EDS.
Whilst this sounds like a bit of a rant, and in truth, that is what it is, it concerns me that EDS is being made out to sound like a cool or trendy illness to have. It isn’t. There isn’t anything glamorous about it. It is already so difficult to receive the correct treatment in helping to live a fulfilled life and this becomes harder when people label themselves incorrectly. Don’t aspire to have a chronic and degenerative illness. There’s nothing cool about it.