One of the most frustrating things about Ehlers Danlos Syndrome is the utter ignorance held by most medical professionals I have come across. The two areas who seem to dismiss it most are rheumatologists and physios. Both of whom I have come up against in the last few weeks, and both of whom I have been very close to wanting to hit!
I was diagnosed with EDS years ago. You would think that the label would suffice, and that treatment could then be forthcoming – this would be the logical route for things to take. The reality though is very very different.
Every time I see someone new, I can almost guarantee the comments and ideas that will get thrown about. First off, it is never taken as read. Every appointment I have with a new person leads to a completely fresh assessment – running through the beighton score, coming out with totally different scores every time. Dismissing the pain, and usually leading to comments about how its ‘just a bit of hyper mobility’ or that hEDS is just ‘Benign Hypermobility Syndrome’. Every time this happens, a little bit more of my sanity is stripped along with it.
When would this ever happen with another illness? Would someone with a broken leg need a new X-ray every time they saw a different doctor just to prove it was broken? Would they be told its just a little sprain when the X-rays came back with proof? Would someone with heart failure really need a new set of tests so that they would be believed? Why is it that EDS is treated so differently?
Another idea that repeatedly comes up is that you aren’t that bad if you don’t score the whole 9 points on the Beighton score system. In reality, if you score over the accepted number, and/or have hyper mobility in other areas then it should still be counted. Just because someones knees may not be hypermobile does not suggest that issues with all other areas, and areas that aren’t included in the scoring system are not causing problems. This woman genuinely had the guts to tell me that my shoulders and hips were not a problem as they aren’t included in the list of hypermobile joints in the test! Apparently the fact that they continuously cause me pain, and sublux constantly are not issues worth considering. She made it clear that she had other patients who scored much higher, and that obviously as I didnt have the whole 9 points, it was ‘benign joint hypermobilty syndrome’. When I explained to her that a) I fit the criteria for hEDS (taking time to explain the other criteria she hadn’t touched upon), and b) benign joint hyper mobility syndrome is no longer a term being used anymore, she came out with a very sarcastic ‘Well you’ve been reading up then’.
I was also told yet again that my pain was obviously effected by my mental health. In all honesty, with EDS it is more then likely that this is the other way round. Sure, I have had mental health problems in my time, but I can quite safely say that I have the same levels of pain when I am happy as I do if I am depressed. The pain levels don’t change – but my ability to cope with it does. Our pain is not psychological. It is caused my recurrent joint subluxions and dislocations – in no other area would someone with a dislocated shoulder be told that it doesn’t cause pain, so why is it that we are told this all the time? It is not the first appointment that I have been to where I would have gladly offered to dislocate their joints and asked them if it was really pain, or if it was just psychosomatic. By repeatedly insisting that we don’t really have pain, they are belittling the illness and continually knocking our confidence. Just because our joints are capable of moving further then most does not mean our bodies are designed to cope with it – it still damages, and it still hurts just like it would to anyone who isn’t hypermobile. Alas, I am not the incredible stretchy woman, as much I would like to be.
This particular referral was at the request of both my physio and GP. They both thought it would be useful to continue the work we had been doing, so I wasn’t expecting the reaction I had from this woman. She took great care to tell me that I had already had my fair share of appointments, and that this service is for everyone, and not just me. She told me that it wouldn’t really help me, and that they couldn’t see me long term (which I am quite aware of thanks), and really its just about ‘teaching you the skills to manage your condition’. She made me feel like I was some sort of greedy NHS hypochondriac rather then a patient – as if spending my time at a physio is what I really love doing in my spare time. I am fully aware that this is not long term, but I am also under the impression that I would have been refused a referral if it was deemed unnecessary. They don’t hand these appointments out like sweets. You wouldn’t leave someone recovering from a broken leg halfway through their treatment, so I find it quite unnerving that that is precisely what she wants to do here. Just because this is a long term condition really shouldn’t mean that you aren’t allowed to access treatment that will help you manage better in the long run.
The last big thing she said that was actually extremely upsetting was concerning the care that the social services have deemed appropriate for me to have in place. She looked at me like I had 5 heads when I told her about it, and then proceeded to tell me that ‘you shouldn’t be using it for things that you can do yourself like washing and cooking, you should be using it to better your life’. This was about 2 seconds after lecturing me about pacing for fatigue. Does she really think the social services have spare money flying around to give to people who don’t need the help? The hours I have been awarded are for things like personal care, assisting with cooking/cleaning and getting out and about. They were awarded because I can’t manage to do those things an awful lot of the time, and when I do manage them, I don’t manage to do anything else. In short, I need the help with the things I struggle with so that I can ‘go out and better’ my life. It was not an easy decision to reach to allow the assessment to take place, and it isn’t something I am jumping for joy about – as a 28 year old woman, I would rather do everything totally independently, but the reality is that at the moment, I have no energy left to have any sort of life, and that is far worse then accepting I might need a little bit of extra help. I know that I look well, but not everything is skin deep.
Every single time I have an appointment like this, I want to run away and hide for the next 20 years. It makes me question my illness – makes me consider the possibility that I have made everything up, even tho I have enough medical evidence to sink a ship. EDS isn’t all about the outside of your body – pain and hyper mobility are a big part, but I have a list as long as my arm of the internal issues my faulty collagen has caused. I wish that professionals would read the info as much as we have to, or at least listen to us when we have read more about it then they have. Judgement held over a patient for knowing about their health conditions seem laughable – surely an informed patient isn’t a bad thing.