During HSD/EDS Awareness Month this year, I’ve been reflecting a lot on my story and my diagnosis. It’s been a decade this year since we realised that something was wrong, but it’s only been three since I was diagnosed with Hypermobility Spectrum Disorder.
I spent seven years being sent from department to department, every doctor or therapist telling me they couldn’t do anything, or couldn’t do anymore. Several neurologists, orthopaedic surgeons, a rheumatologist who said EDS didn’t exist and young people didn’t get fibromyalgia. Physiotherapists and occupational therapists, some good, some who only saw me once because they didn’t understand me. A set of nerve tests, plenty of ECGs, lots of blood tests. I started using a mobility aid because my legs couldn’t hold me up.
Eventually I was lucky enough to see a rheumatologist who said it was almost certainly HSD or EDS, and sent me to one of the only specialists in the country for it – 2 hours away in London. I was diagnosed when I saw her, given the first painkiller that ever helped me, and referred to the pain services in Bath (also 2 hours away) who really helped me get to a point where I could cope much better in everyday life.
A lot of people think that labels are a bad thing, but each time I’ve gained one I’ve felt a bigger weight off my shoulders. There is nothing quite like spending years being shunted between doctors who don’t know what’s wrong with you and eventually getting an answer.
I suffer daily from chronic pain, chronic fatigue, easy bruising and injury, gastro issues and more, and often deal with subluxations that I wear braces to prevent. I also have Postural Orthostatic Tachycardia Syndrome, which is a common comorbidity that causes autonomic dysfunction, so I am constantly dizzy and my blood pressure drops when I go from sitting to standing (this was diagnosed much later). My joints are so lax that only my muscles properly hold me up – my lack of activity in my teenage years due to chronic pain meant that before my pain rehabilitation, my legs collapsed constantly under me leading to me needing a mobility aid and now this still happens when I’m having bad patches.
Because of how significantly this all affects my life, my label matters to me. It took seven years of uncertainty and hospital visits and pain and anger to gain it, and it meant to so much to me to be believed and for someone to say that I was valid, and not only that but was able to give me some support. One thing that I find really interesting looking back is that at the time I believed that I didn’t deserve as much help because I was diagnosed with HSD rather than Hypermobile Ehlers-Danlos Syndrome (hEDS), as I was one point off diagnosis for the latter. I’ve since learnt a lot about the conditions and the fact that there is no inherent difference in their severity, but at the time I had some resistance towards this.
I still grieve for the years I’ve lost to my chronic illnesses, and especially those when I was so lost and sad and confused. But I am so grateful for the care that I’ve had in the last few years, and for the doctors and physios and occupational therapists that I’ve worked with. I’m grateful for my other diagnoses, those I gained both before and after this one, and I am constantly aware of how lucky and privileged I am to have seen a doctor that believed me because so many chronically ill people don’t get that. Yes, it took seven years for me to be diagnosed, and it’s almost certain that part of why I deteriorated so badly was because of this, but I am lucky. That shouldn’t be the case, but it is.
And that’s why my ‘label’ means so much to me. It’s not my entire being or personality, but it’s a huge part of my life, and I think it’s okay that it’s important to me.
HSD/EDS Awareness Month is about to end, but my condition affects me for the other 11 months of the year too, and so many others. For some, it is a huge part of them and for others, it isn’t – and both ways are valid.