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It’s a shitty club but welcome nonetheless

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Everyone who’s ever read this blog knows that I have struggled with joint pain. When I got the diagnosis of Rheumatoid Arthritis I was so relieved. I felt that things might start to get better, I was very optimistic.

I have this friend who also has suffered with a lot of joint problems and assorted body crap. She had a long journey but she finally got a diagnosis of Ehlers-Danlos Syndrome.

As time went on I became much less sure about how well the diagnosis of RA fit me. I was still optimistic that the Rheum would be able to give me a magic pill and make a lot of things better but I also struggled because her ideas about what I should be experiencing and my experience of living in my body were not all together in agreement.

Now, as we compared notes, my friend subtly (read – like a sledgehammer) began to suggest that I showed a lot of symptoms of EDS. She felt that maybe I didn’t have RA at all and kept on ever so gently prodding me to investigate the possibility of EDS. It’s true, I was resistant to her message at first. I had a diagnosis and I was sticking with it. What was her deal wanting to spread her diagnosis around?

Eventually though, after more consultation with her and a fair bit of my own research I went to my GP and asked for a referral to see a geneticist. I managed to convince GP that it was worth a shot, although she was quite skeptical.

It’s been a year since that referral was sent and I have to admit that I’ve doubted the need for it at times. My Rheum outright laughed at the suggestion that I might have EDS. My pain specialist assured me it was irrelevant as it’s not associated with pain anyway.

This morning I finally had the long-awaited appointment.

I’ll admit that I was nervous, I have had some really hit and miss experiences with specialists but I calmed my nerves with the thought that if I didn’t have EDS, that wasn’t so bad and if I DID have it, well, I could give a pretty big fuck you to some of my doctors. So worth it. As it happens, it was really, really worth it.

The Geneticist (Mr Genetics Man) was one of the loveliest specialists I’ve ever seen. He conducted a very thorough examination and (surprise, surprise) informed me that he thinks I DO have Ehlers-Danlos Syndrome. I actually thought I misheard him at first, I was so sure that this would likely be another dead end.

I think Mr Genetics Man  had read my hospital file (complete with details from the ever-charming pain management team) because he was very quick to re-assure me that it’s really common for EDS patients to be misdiagnosed, to be told that they’re just depressed, imagining it, faking.  He wanted me to be clear that the type of EDS that I have (hypermobility type) is extremely painful. That he sees patients who have suffered a great deal, having consulted with doctor after doctor who can’t understand how there can be so much pain when they can’t see anything wrong. He said he sees patients who have been angry and depressed, but it’s because of the level of pain and the lack of understanding from doctors.

Now, there is no treatment for EDS but such a weight has been lifted knowing that I am now dealing with the correct diagnosis. It’s the first time that all the pieces have fit. We still have to pick apart what’s going on, whether there is RA too or whether it’s just been EDS all along (I suspect the latter).

I should probably be a little bit less jubilant over the diagnosis of an incurable genetic syndrome that I have likely passed on to at least some of my kids. I’m sure that it would be worrying for some people and I do worry for my kids, I hate that they might face some of the challenges that I have faced with my unruly body.

The thing is, this diagnosis gives me a sense of having all the power again. I may not have control of much but I now get to tell my doctors what I am experiencing and I have the diagnosis to back it up. My Rheum can no longer say “that can’t be happening – you must mean this” (really, she really has), she has to listen and open her mind a bit to the possibility that I am best-placed to describe the experience of being me.

It’s true, I have a genetic disorder that can’t really be treated but today I am much more at ease within myself than I have been in a long time.

So, I’d like to thank my subtle as a sledgehammer, ever so persistent friend. Without you Veronica, I wouldn’t be in this place. I might have gone my whole life without knowing what was really wrong with me.

As you pointed out to me, it might be a shitty club, but we have black humour.

We have the power that comes with knowing, too.


13 responses

  1. Wow, thank heavens for friends like Veronica. I want to say congratulations on finally finding the answer, but that doesn’t seem quite right. I’ll just settle for imagining you slapping those pain management assholes over the head with a medical textbook. Or is that petty? You know what, I don’t think I care.

    • Congratulations are fine, I am inordinately happy about it. It’s possible that I have fantasised about rubbing the PMU’s noses in it, maybe. I know I’m looking forward to seeing the GP and the Rheum and waving it at them. I shall enjoy it very much.

  2. Sledgehammer? Okay, fair enough, I’ll cop to that.

    After my diagnosis, I seriously considered sending a giant “fuck you” letter to every single specialist I had seen who had suggested I was faking, or depressed, or anorexic. I didn’t do it, but MAN, I wanted to.

    Welcome to the club lovely. I can’t make anything better, but I can tell you that having that diagnosis makes the mental side of things so much easier.

    It also stops things like being labelled a drug seeker. Which is nice.

    Also, your comments are being weird. I had to log in with twitter to leave this. Told me I had to be logged into WP to comment?

    • I meant sledgehammer in the nicest possible way, like a sparkly rainbow sledgehammer of truth and justice.
      I have no idea what my blog is doing, I checked all the settings and everything appears to be in order. It’s weird.

  3. It may be a shitty club, but it is a place where you can belong and begin to get some real support, perhaps even some relief. Enjoy your ‘I told you so!’ moments because you do know yourself better than any specialists. Stay strong xo

    • They have spent an awful lot of energy trying to make me fit a diagnosis rather than finding the right diagnosis to fit me, I wonder how receptive they are going to be to this new diagnosis. I think there may be some resistance but I think I’ll find that entertaining!

  4. I’m glad you have a dx finally. It can’t be easy but now you know what you are dealing with

    Gentle hugs

  5. Lyndal hildebrand

    Veronica is a god send <3 if it wasn't for her I wouldn't have been diognosed with EDS myself! I read her blogs and felt exactly the same-so my dr reffered me and my daughter to a genetisist and we were both diagnosed with Classical EDS. Was great to finally have a diagnosis after being ignored all these years :)
    Thank you for your story :) hopefully doctors will stop treating us like we deserve :)

    • Yes, she’s certainly done an amazing job of getting it out there, I think she’s helped a lot of people. I’m glad to hear that you have a diagnosis too, it’s a great feeling.

  6. I’m glad you have the dx. She’s suggested it to me more than once too. As I’m still mostly sans dx, maybe I ought to be listening too.

  7. allthingsvisibleandinvisible

    It was a great relief when I was finally diagnosed with EDS last year. I thought I was a bit odd for feeling quite happy about it – but it’s the whole ‘knowledge is power’ thing. My pain management practitioner commented that I was a different person post-diagnosis – much more positive and together. Thanks for sharing.

  8. Oh wow! I logged in today on the offchance you would have posted, and now look what I read. I am so pleased for you that you have a diagnosis and that you finally feel you have power over what is happening to you.xx

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