Monday 7 October 2013

Belinda: Coming out. Dysautonomia Awareness Month.

Today's guest poster is fellow Australian, Belinda. I've known Belinda for a couple of years now and we became firm friends over the fabulousness that is the Internet (I know it gets a lot of bad press, but I wouldn't know half the amazing people I do without it. This dog hair covered keyboard of mine, negates all the obstacles faced by being stuck at home with a dodgy body. So, *High Five* internet). Could it be the wacky sense of humour, the perfectly crafted sarcastic comebacks or the fact that she has some decidedly cute bunnies? I don't know, but the woman never fails to crack me up no matter what the topic. 

Greetings, I’m Belinda:
Married, mumble thirty mumble eight year old nurse. Actually, soon to be ex nurse, thanks to the phenomenal life-destroying powers of Bob.
I became ill in January 2010 with H1N1 (swine) ‘flu and was sick as a dog (or rather, sick as a pig). Cue two years of worsening illness, multiple doctor’s visits, fear, uncertainty, frustration until I finally received a diagnosis of POTS in January 2012 with other half hearted diagnoses like CFS and mild Guillain Barre Syndrome.

Hello all Living with Bobers and big cheers to Michelle for letting me invade her blog again as a guest poster (could that be the ultimate in laziness? – can’t be arsed to write your own blog so just hijack someone else’s from time to time). I’m writing today about coming out. Coming out about being a person with a chronic illness. It took me a long time to think of myself as someone who was always sick. I just couldn’t admit it. The words wouldn’t assemble themselves in my brain. I’d been healthy my whole life with the only time I’d ever been in hospital being my own birth. Pre-illness, I was fit, probably the fittest I’d been since I’d left school. Getting sick hit me like a ton of bricks. It was sudden and it was life changing.

I tried very hard to deny it and talk myself out of how sick I was. When you look after the sickest of sick patients, your idea of what constitutes proper illness gets skewed. Seriously Bel, just take a big cup of Harden the Fuck Up and get on with it Princess. It turns out I just couldn’t do that. By the end of 2010 I was physically no longer able to work. Had I known then that was going to be my last shift, I would have loved to take some time to say goodbye and make a clean break but never for a second imagined that I wouldn’t return. I vanished without a word and understandably my colleagues were wondering why.

I’ve always been a person who has preferred to be sick in private. I withdraw into my home and myself and only come out when I can face the world again, healthy. I’m not sure why. Do I perceive it at some sort of weakness to be sick? It’s a ridiculous view considering I class the patients I looked after as some of the strongest people I’ve ever met, and applaud their bravery. Unfortunately, chronic illness doesn’t allow the luxury of being sick in private, no matter how much I’ve tried to will it. So, after nearly three years away from work I recently had the opportunity, and am finally in the right headspace, to tell my story to the people I used to work with about living with POTS. For the first time I told it warts and all and it has turned out to be a very liberating experience.

Liberating for me because fighting to hide how sick you are is hard and exhausting and liberating for them because there’s no half probing questions trying to elicit all the gory details about your illness. I thought I would feel laid bare, naked and exposed but all I feel is supported, loved and grateful. I’ve finally decided that hiding what I’m going through so others aren’t scared off or feel the need to pussy foot around me isn’t the way I want to live this illness. If they can’t handle it and shove their fingers in their ears yelling la-la-la-la, then it’s not my problem and I feel stronger for choosing Truth.

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.

I already knew I liked Belinda, but when she said she wanted Spandau Ballet's, "True", as her musical accompaniment I realised we were on the way to BFFs forever. I pretty much cried into my cornflakes when I missed a recent tour. Damn you, Bob!


  1. Omg Spandau Ballet, where we separated at birth, or do you have some fabulous mind trick that allows you to rummage through my music collection ;>) The last concert I managed to sit through was Chris Rea about 6 years ago, and i've been trying to find his 'Red Shoes' on YouTube to link to you if you don't know it, it even gets my feet tapping when i'm feeling really low. I want to come an live in Aus, even you chronic sickies are so cool! Rock on Bel and Michelle xx

  2. I really understand! There's the denial, stubbornness, disillusionment, and disappointment of it. You can't imagine others could possibly understand and you feel safer keeping things as "mysterious" as possible. It actually feels good to believe the impression of wellness you're putting out there until you just don't have the energy to be anything but authentic anymore. For me, that's how the truth of it all comes out...


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

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