Wednesday 2 October 2013

Claire: The ups and downs of the journey to diagnosis. Dysautonomia Awareness Month.

Huge thanks to Claire, who is my first guest poster for Dysautonomia Awareness Month. I've known Claire for a few years now and can tell you that she is a top chick, bringer of sushi to starved bloggers locked in horrible hospitals, maker of spoon dresses, and human to one stylish cat by the name of Gremlin Squishface. Send her some love. 

Claire, 23. Studied Arts at the University of Melbourne, Australia, before I got sick 4 and a half years ago. I have POTS, Migraine, Gastroparesis, Asthma.

For me, getting sick was a gradual process. A slow compromise between want and capability. I spent a lot of it in denial. I never talked about my problems, was constantly brushing things off. I didn't even notice my migraines had become a regular problem until my housemate pointed out I had taken painkillers everyday that week. I used my migraines as a handy excuse for not submitting essays on time - until I said it out loud and realised that was actually the reason. I was mortified when I started fainting, and apologised profusely to friends and paramedics when they took me to hospital. I joked about it afterwards, as though I hadn't been terrified when it happened. I gave up things I loved one by one, until it was all gone. I dropped a subject. I stopped cycling to uni. I fainted at work and took a few weeks off - and then never went back. I called my father, sobbing, asking if he and my mother could support me financially for a little while. It turned into a whole year. I stopped going out with my friends. I stopped reading. I dropped two more subjects. I withdrew from my course.

Yet I still didn't feel like a 'sick person' - I never felt sick enough. It's a strange concept, not being sick enough; hard to imagine if you're a healthy person. Yet here I was, wanting to be sicker. It wasn't the actual illness I was wanted - I certainly didn't want to be in anymore pain or discomfort than I was. I just wanted help. I wanted to be able to ask for that help, and not feel like an impostor. My life was falling apart, yet doctors would send me home from the ER and tell me to see my GP. My GP would shrug and refer me to specialists. Specialists would tell me to keep taking medications that were clearly not working. And I'd end up back in hospital and the merry-go-round would start again. My parents would ask if I thought I would be able to go back to work. My friends asked if I'd be coming back to uni next year. I felt incapable of telling them how incredibly hard those things were for me, because I didn't look sick. I only had a vague diagnosis of 'migraine' to give them. I felt like a fraud.

Doctors were, to my extreme frustration, the most dismissive. Two neurologists told me that, despite never having treated or even heard of such a thing, my fainting, dizziness, fatigue, brain fog, and memory problems were just migraines. Despite regularly having these, and other symptoms, in the absence of any migraines*. I remember my father telling me not to keep expecting a silver bullet that would solve all my problems. I never expect a cure, I just wanted someone to believe me when I said that treatments weren't helping, and I felt like more was going on. I just wanted someone to acknowledge how absolutely terrible I felt, and to take it seriously.

In some respects I'm lucky I had an early diagnosis of migraines. It helped to avoid the dreaded 'anxiety' label. Dysautonomia, to the untrained or simply ignorant eye, can present as anxiety and panic attacks. Anxiety is actually a symptom of POTS, caused by insane amounts of adrenaline in the blood stream. It is however, a purely physiological problem, not a psychological one. The medical systems often archaic attitude towards mental illness means many people are told that their problems are all in their head. I've never had this said to me, but it was often implied that I was exaggerating, and that I could get better, if I only wanted to. It's the burden of invisible illnesses that you can't SHOW someone how much it hurts, or how exhausted you are, or how much it hurts.

I was definitely lucky to have incredibly supportive friends, and my family eventually saw just how sick I was. But I distinctly remember the day it changed. I dragged myself several suburbs away to a cardiologist - the second one I had been referred to, after the first had deemed me undiagnosable - not expecting anything. She asked me a few questions, look at my test results, turned to me and said, "You have Postural Orthostatic Tachycardia Syndrome". As she listed symptoms I nearly fainted just from the shock - what she was saying actually made sense. I was elated. After everything I had been through, my experience was validated. I had a thing, a name to give people, and explanation for my problems. For my cardiologist, it was another new patient assessed. For me, it was the answer I had spent a year a half searching for

* I later found out my second neuro actually treated patients with POTS, and yet had never noticed the symptoms in me. Needless to say he was dumped.



For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Like Claire, I was very much of the 'I'm not a sick person' brigade for a long time. Just delusional really. Crowed House's "Not the girl you think you are", always comes to mind when I think about this aspect of my crazy.


  1. Fabulous post Claire, you write so well xx

  2. So well written, thankyou for sharing!

  3. Thank you Claire, I know finally getting a label is uplifting, if only because it proves it's not 'all in your head'! And Michelle, more Crowded House, the Macaron of the music world in my opinion, ta muchly x

  4. Battle on, warrior girl! You're awesome. Love Cath.

  5. "I never expect a cure, I just wanted someone to believe me when I said that treatments weren't helping, and I felt like more was going on. I just wanted someone to acknowledge how absolutely terrible I felt, and to take it seriously."

    That is so exactly me right now. I am having a hopefully positive confrontation with my rheumatologist next week, because I feel like I'm just being dismissed. I'm clearly getting worse, but it's like she doesn't even see it... and it pisses me off! I just want to know what the hell is wrong with me so I can either treat it or learn to live with it! Because what's happening now just is NOT cutting it. Not at all.

    "After everything I had been through, my experience was validated. I had a thing, a name to give people, and explanation for my problems." This gives me hope. Thank you.

    1. Hey Cassandra, I really hope you got some answers! There's nothing worse than not knowing - I remember when I started getting really sick I would have been happy to be told that it was something like cancer just so I had a damn answer. I hate it when doctors are so flippant about what's happening, and don't ask how it actually impacts you. Good luck!

      Claire :)


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.