The power of a diagnosis

As I mentioned in a previous post, I have mobility issues, and regularly use a combination of crutches, a cane, or a wheelchair to get around. This is because if I was on my feet for more than a few minutes, my hips, knees, feet and lower back would start complaining, and then start screaming at me. In other words, it is painful for me to stand for more than a few minutes at a time. And the worst part of it was? I didn’t know why. Every GP and orthopedic specialist I had seen could not explain why. I even once had this doctor insinuate I was faking it, just so I could use a wheelchair.

This week, after months on a waiting list, I saw a rheumatologist. Nice lady too. And within 15 minutes she gave me a diagnosis. Benign Joint Hypermobility, also known as Hypermobility Syndrome.

It is a connective tissue disorder. A lot of the joints in my lower body over-extend themselves (similar to when you are double jointed). I never thought anything of it. I thought everyone’s knees locked backwards, the way mine had since I was a child. Anyway, what happens is that my muscles in my joints are forever working extra hard to keep the joints in place, that they are becoming worn and tired. It is a genetic condition, and I have since found out that my younger sister, who lived in Melbourne, was diagnosed with the same condition six months ago. We hadn’t realised that it was the same thing, as for her it manifests in joints that are easily dislocated and ligaments that tear easily. For me, I just had very sore joints that I couldn’t stand on.

I have been given some medication specifically for chronic pain (which doesn’t have any narcotics or opioids, which I always hated), and been referred to a physio which specialised in a pain management, and they are going to revaluate me in six months.

But the truth is, I couldn’t care less what my diagnosis is, or whether it is treatable or not. All I cared about was that I had a diagnosis. I had a reason, an explanation, for what was going on with my body. One of my biggest issues in getting help and accessing disability services has been my lack of documentation to justify my needs. So many disability services require a definitive diagnosis before anything can be done. I still don’t have access to everything (Centrelink disability payments have a criteria that you have to be permanently disabled for the next two years…Now I am getting treatment, who know what state I will be in six months), but it means I can access some things.

So what happens now? I go to the physio, I take my medication, and enjoy my new wheelchair (a second hand chair which I paid for out of pocket, as I have neither the funding nor the money for a new one). That and continue my campaign for my apartment complex to install a ramp at the front gate, so I don’t always need to enter from the back alleyway.

Bowties are cool.

Bowties are cool.

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3 responses »

  1. Congratulations!
    Weird, l know, but when you finally tell people (including Centrelink 😉 ) what is “wrong” with you it makes life so much easier. Completely nuts!
    Here’s to better access to the things you need.

    P.S. Bowties are indeed cool B-)

  2. Hey Suzie!
    It’s Audrey, one of the other Pinnacle Scholars. This was really insightful to read. I was diagnosed with Type III Ehlers Danlos Syndrome at the start of last year, also a hypermobility/connective tissue disorder where my body doesn’t make collagen.

    After 18 years, the diagnosis was finally able to answer questions of why am I in constant pain/why can’t I walk today? I hope you’re going well and thank you for writing this.

    Audrey x

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