Disability

My Diagnosis Story

breathe.

This is second part of my posts for EDS awareness month, it’s going to be a story all about how I got my diagnosis. If you haven’t seen the first part you can check it out here.

I was diagnosed with EDS at around 17, however, I’d been experiencing unexplainable pain in my knees and hands as well as unexplained sickness throughout my teenage years. I’d been to the doctor multiple times and it was always put down to growing pains. I was never satisfied with that answer, I had the feeling that there was something more to it than that. I just always had this feeling that there was something not normal and when a palm reader even suggested I could have a health condition, I actually believed it.

After getting nowhere with doctors, I actually ended up accidentally diagnosing myself. I just happened to be at home on a weekday as I’d taken the day off from my work placement in a nursery. I was in pretty excruciating knee and shoulder pain and just couldn’t face the day. Anyone who’s British will know that if you’re ill at home you’re watching daytime tv. This almost always means you’re watching This Morning.

This Morning is a kind of topical magazine-style daytime TV show. The show always has a phone in section, where viewers phone in to discuss a topic. The topic this day was “is it okay for parents to write letters to excuse their child from P.E.?”. A mum rang in saying she has to write lots of letters for her child as he has Joint Hypermobility Syndrome. The doctor answering the call went on to explain that Joint Hypermobility Syndrome was essentially joint pain caused by being double jointed.

I’d always been double jointed but had no idea it could cause pain so never thought to mention it to doctors. I started to google Joint Hypermobilty Syndrome and I had lots of the symptoms. Through the googling, I came across EDS- Hypermobile Type (hEDS), I was shocked about how many symptoms I had. The symptoms even explained things I’d never thought could be related to one condition like my easy scaring and nausea.

I called for my mum and told her. I remember just thinking this is it, this is what I have. I actually started crying because I was sure I’d finally found what was wrong with me. I knew everything hadn’t been just in my head or just growing pains, I knew I was right all along.

We booked a doctors appointment and wrote down all my symptoms. Finally, they referred me to a specialist. The first specialist I saw diagnosed me with just Joint Hypermobility Syndrome, but I was pretty sure I had hEDS. I got a second opinion with a specialist in EDS and finally got my hEDS diagnosis.

My diagnosis helped me so much, I finally had a medical reason for why I was off so often for placement and was able to cut down my hours. I also receive support at university such as extra time and the use of a computer in exams. But most importantly, I was able to learn how to manage my condition. I really don’t know what would have happened if I never watched that This Morning episode. I might still not have a diagnosis. Many people don’t get diagnosed until adulthood. If there was greater awareness for EDS, I might have been diagnosed sooner. EDS awareness month is so important and I glad I was able to do my small part in making more people aware of EDS.

I’d like to thank you so much for reading this post!

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-Ella xxx

Other EDS Related Posts

Part 1-EDS Awareness Month

A Letter to Someone I’ll Never Be

Living With an Invisible Disability

More information on EDS

The Ehlers Danlos Society

 

 

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16 thoughts on “My Diagnosis Story”

    1. I am actually adopted so I don’t really know my families health history. My brother and sister don’t show any signs though

      Liked by 1 person

      1. Oh that’s really sad, my mum went into menopause early than expected so wasn’t able to have children of her own.

        Liked by 1 person

      2. That’s really sad, but on the positive you would have your brother in your life if that never happened. My mum always says she’d never go back and change things now even if she could

        Liked by 1 person

      3. Not really….we barely know each other as adults.
        My parents were not loving or even very nice, so we are rather distant. I tried to get some sort of relationship going with my brother after we both married, but he didn’t reciprocate, so I gave up. I won’t push.

        Liked by 1 person

  1. Thanks for sharing your story. I live in the UK too. I think I have joint hypermobility. Not EDS. But I had louts if bone breaks as a child and was forever pulling or spraining muscles. I have chronic back pain now, but physio and doctors can’t agree whether I have joint hypermobility or not because I don’t tick the right boxes. There doesn’t seem to be much specific advice other than try this one physio exercise forever and discharge!

    Liked by 1 person

    1. It can be really hard to manage the symptoms of Hypermobility because there’s not really any other treatment other than physio. Have you tried looking for online forums for Hypermobility? Sometimes people share ways to manage and how to get a diagnosis.

      Liked by 1 person

      1. I did counter the association, but I guess because I don’t have EDS I felt like a bit of a fraud! I don’t get a high enough score on the beighton scale because my legs are really tight and my thumbs aren’t that mobile. I feel that it’s in pretty much all my other joints. In physio they say they can only work on one small section at a time and I feel I need a full body approach. But I’m sure it’s nothing like what you go through.

        Liked by 1 person

      2. I can’t imagine people would think you’re a fraud at all. Joint hypermobility can be just as hard as EDS. I actually haven’t started physio yet but I will be the summer and I have to see how it goes

        Liked by 1 person

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