4 years after my diagnosis, I am still struggling to be taken seriously

Posted April 30, 2020

kirsty's story

As far back as I can remember, I’ve always had issues. Born with congenital hip dysplasia and constantly falling over and injuring myself with knee and ankle subluxations. As a child, this was treated like a party trick by my GP, and eventually, I was told to stop these tricks. I pretty much always remember being in pain but thinking it was normal and being told it was just growing pains. This has probably been my biggest issue, having these symptoms normalized, when in reality they are far from normal.

I learned to cope with the pain and over the years my body adjusted to cope. Following a bad case of whooping cough, my body was very weak and slowly my symptoms started to worsen and became hard to ignore. But I struggled to be taken seriously; being treated for endometriosis had my GP believing all my symptoms were related to endometriosis. My amazing gynecologist said that this wasn’t true and asked my doctor to stop referring me there for joint pain, however, my GP kept referring me back to gynecology. So my gynecologist referred me on himself to a hip and back specialist, and also to pain management. We ruled out arthritis and the specialist noticed that my back was too straight but offered no help.

Pain management finally realized something else was going on – hypermobile Ehlers-Danlos syndrome (hEDS) and sent me straight to a geneticist (pre-2017 hEDS criteria). She went through the Beighton Scale with me, as well as multiple other tests, and pretty quickly ruled out other types, and finally gave me a diagnosis of hEDS. I thought this was everything I needed to be taken seriously… I was very wrong.

4 years on and I am no further forward, I have seen a physiotherapist who has given me very basic help, and a recent trip to my rheumatologist has left me feeling deflated and back at the start. He refers to my EDS as joint hypermobility syndrome (JHS) which, in my case, means it hasn’t been taken as seriously. I have had no help with symptoms except physiotherapy and I’m struggling to be taken seriously.

This has to be my biggest concern regarding this condition; I need to know how to treat myself and I also need to know how to manage the comorbidities that come along with this, postural tachycardia syndrome (PoTS), etc. At this point, I feel the next stage should be going back to the geneticist to be diagnosed under the new criteria (which I will) for hEDS but because of my previous type 3 diagnosis, they feel it’s not necessary.

So right now I’m very lost and feeling hopeless, desperate for the help I so badly deserve.

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