Why my ‘labels’ matter to me & HSD Awareness Month | chronic illness

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.

Why I (sort of) miss my walking stick | disability

In May 2017, I started using a walking stick – on the day of my GCSE biology exam to be exact, and I was so nervous about what people would say. It’s not exactly seen as normal for a 16 year old to be using a cane, is it? But I had very little choice; I couldn’t hold myself up and the amount of pain I was in wasn’t worth it compared to the slight embarrassment I felt when I first started using it.

Using a walking stick as a teenager is really difficult, and I can’t sugarcoat that. Elderly people glare at you because they think you’re faking; people make comments as you walk past. A lad imitated my legs collapsing as he walked past me once, and I’ve never felt so self-conscious. My condition that was once invisible became public property to discuss and question and laugh at. A boy from a younger year once shouted after me asking if I’d just come back from a war, which was not only humiliating, but extremely offensive to veterans.

It got easier with time. I became more comfortable with going out; it took longer for me to feel okay when I was just with my friends instead of my mum, purely from a protection perspective (although my friends are amazing, and so supportive). I got to a point where I just rolled my eyes when someone made comments, and I empowered myself through having photos taken with it.

This was taken in Swansea by my best friend Caitlin because I walked past this wall every day walking to work experience and I happened to match it.

I stopped using it in January 2019, when I had my pain rehabilitation programme and strengthened my legs. And obviously, I was, and generally am, really happy about that – people don’t look at me, they don’t comment. But that causes other issues for me, and I sometimes miss it – not in that I want to use it, but the fact it has made my disability invisible again.

If people knock me, it hurts for at least four days, and this happens a lot because I can’t walk very fast. I don’t feel like I can ask for a seat on trains like I used to, so I’ve stood up most times than not since January on shorter journeys and the tube in London. It feels like I’m constantly dismissed and seen as able-bodied, but I’m still working on building up my strength so my legs still collapse under me and I can’t walk very far in one go.

This isn’t meant to be a sob story. This is more about the differences between being invisibly disabled and having a visible invisible disability (which is different to a visible disability, which is more about visible symptoms, I believe). I know I am privileged to be able to walk around without people making such comments, I’m more likely to be given a job, and I am less likely to find that places are inaccessible to me. There is definite privilege in the stage I am now at with my disability, and it’s quite undeniable.

But I can’t deny that I sometimes miss the ease that it could sometimes bring in people accepting that there is actually something wrong with me, even if that was often grudging. Now, I feel like I have to prove myself far more, and it’s difficult in a different way.

Whether your disabilities are visible or not, there will always be a fight. Disabled people still aren’t equal in so many areas, and often aren’t even included in lists of marginalised people. So it’s interesting for me to look at the different versions of the fight that I’ve experienced, and will continue to experience.