Accepting My Diagnosis

When you have a hidden illness, it can take years (or decades for some) to get a diagnosis. The complications relating to my Ehlers-Danlos syndrome started when I was about five (chronic foot problems, constant sprains and severe “growing pains”) but it wasn’t until I was 21 that I received a formal diagnosis. In those years I was struggling but when you are consistently told by medical professionals that they can’t find anything wrong, you begin to question everything. Even some of my family began to genuinely think all the problems I was having were psychosomatic and, admittedly, I began to question myself as well. I tried to push through the pain. I tried to tell myself it was in my head and that “everyone’s joints do this”, but deep down I knew something was amiss.

When I finally received my formal diagnosis, it was such a huge relief. I felt vindicated. I could trust myself and my body – I wasn’t making it all up! It was a big milestone in my life, but certainly not the end of the journey. That momentary rush of vindication didn’t last long before I started to feel the full gravity of the situation. I had been diagnosed with an incurable, chronic and debilitating disease.

I was riding an emotional rollercoaster and there was no getting off. I went through – and still am going through – the stages of grief. After understanding my diagnosis, I denied I had it; convincing myself I only had a few of these traits or that I wasn’t affected that badly. I began to bargain and tell myself things like “you just have to push through and build a career”, or “just make it to Friday and you can rest all weekend”. I mostly skipped over anger, I’m a pretty placid person, but I certainly felt sadness and still very much do. I feel sad and grieve for the life I wanted to have. I grieve for the things I can no longer do. I didn’t feel like the fun, carefree and very clumsy girl who loves sports and travelling anymore. I now know I’m still that person, but I have to make a hell of a lot of adaptations!

Over the next few years, I faced a steady deterioration in my health; my shoulders, hips and recently my knees have all started having issues. As my mobility has decreased and my health complications have increased, I’ve lost people that I thought were friends and I’ve built new friendships that are worth more than all the lost ones. If not for the support of my family (the ones who didn’t still think I was a hypochondriac) and friends, I would have totally unravelled. I sought out other EDS sufferers when I could and I built support networks with them. I also joined a local support network run by the EDS UK charity. Although I can’t always make it in person, knowing that the resource is there helps me a lot.

It took four years after diagnosis to finally pluck up the courage and the money to go to therapy. I personally am a huge advocate of counselling and therapy. I think even if you’ve had an entirely normal life, it can be hugely beneficial. Prior to this, I was riding the rollercoaster of emotions mostly alone. Sometimes my family and friends would join, but ultimately I was dealing with it myself. I hate to feel like I’m complaining or bothering people with my issues, so I tend to keep a lot inside and not tell anyone what’s going on inside my head. It’s a huge weight to carry with you (not helped by having weak joints!) The support of knowing I had someone to talk to that was totally impartial has been immeasurable. There are some psychological minefields – like getting to grips with the fact I need to start using a wheelchair sometimes – that friends and family likely can’t help with.

Sadly, as we all know, our NHS is strapped and things like therapy are not top of the priority list. But there are other ways thanks to some amazing charities like Mind who offer talking therapy locally at reduced prices all over the UK. If you are a student, your university offers it. If you are employed, some companies offer it.

I am still going through my journey to acceptance of my diagnosis. Prior to the diagnosis, I assumed it would be the end once I had a bit of paper validating everything. Oh, how wrong I was. I’m almost four years on from diagnosis now and it still feels pretty raw. Without support, I don’t know where I would be. I recognise that not everyone’s journey will be the same, but I wanted to share my story in the hopes that it might help some of you going through it. Don’t give up. Trust yourself. Seek out and accept support wherever you can.

Lily x


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