Wednesday, December 1, 2021

‘On the Outside I’ll Look Fine, But On the Inside I’m on Fire’ Invisible Illnesses: What It’s Like Living with Fibromyalgia

We’re putting the spotlight on Invisible Illnesses in this new series. Are you one of the many Kiwi women who suffers in silence? 

In this series we’re talking to Kiwi women about their health battles with Invisible Illnesses, their journeys to being diagnosed and what’s given them relief along the way. Our hope is that by sharing these stories, they may help spread awareness of these illnesses to other women, giving some tools to help, inspiration to those who can sense something isn’t quite right with their health to continue to search for answers and ideally, get diagnosed sooner! If you’d like to contribute your story, please drop a line to [email protected]

Here, Capsule’s Kelly Bertrand talks about her own invisible illness, its ironic beginnings and how she copes with constant, chronic pain.

Like all good stories, mine starts with Alanis Morrisette.

The year is 2017. We’re at the beginning of the #metoo movement, you can’t get away from hearing Despacito on the radio and we decided that shoulder pads were, in fact, back in.

Meanwhile, 27-year-old me is sat at her desk, feverishly working away as an assistant editor at a weekly magazine. As usual, I’m stressed beyond all reason trying to do my part in the massive machine that is a weekly mag, when a story crosses my desk for proofreading.

It was a yarn about a Kiwi woman who had been battling an illness called Fibromyalgia and as I read through her story, Alanis’ iconic Ironic lodged my head and I couldn’t help but blackly laugh.

Every single symptom I’d been experiencing – the excruciating, unexplained pain I’d been feeling, the brain fog I couldn’t shake no matter how many cups of coffee I downed, the waves of paralysing tiredness – was written in black and white on the proof page in front of me, and I finally had an explanation.

Did I have Fibromyalgia?

Turns out yes, yes I did. And the reason why it was like rain on your wedding day? (For the purposes of this story let’s just skip over the well-known fact that NOTHING in that song is actually ironic). Because as the Kiwi woman wrote in her story, stress is one of the biggest catalysts of Fibromyalgia onset.

Was my job making me sick – and did I just realise that from DOING MY JOB? Ok universe, that’s a good one. Fair play. Lolz.

So what is it? Good question because before that fated story crossed my desk, I had no bloody idea either. Fibromyalgia is a chronic pain condition that’s characterised by widespread musculoskeletal pain, accompanied by fatigue, sleep and memory issues. Doctors reckon it’s a disorder in the way that the nervous system processes sensory information, and how the body processes pain signals.

The crux of it is that I’m almost always in some degree of pain. For me, it mostly starts in my fingers – a sharp ache that kind of pulses – before moving up my forearms and into my chest. My body goes incredibly stiff, so much so I have trouble getting up off chairs and walking down stairs. I can’t turn my neck which I’ve found out is VERY annoying when you’re driving, and I can’t make my fingers open and flex. And if I’m in a ‘flare’ (sounds so much cooler than it is) even lying on a bed can be excruciating.

Calm on the outside, on fire on the inside – welcome to Fibromyalgia, says Kelly Bertrand

The pain kind of feels like sharp knives, combined with a bone-deep ache you can’t shake. Sometimes it’s constant and other times it comes on with such suddenness and force it’ll cause me to yelp out or drop what I’m holding.

The thing is, it’s not an illness you can see and on the outside, I’ll look fine. But on the inside my entire body will be on fire.

I’m not very comfortable talking about my illness even to those close to me because Jesus, if I mentioned every time I was in pain I’d be a very annoying broken record. I also hate complaining (well, about this anyway) and I’m a big fan of the wildly unhealthy Kiwi mantra of ‘Suck it up and she’ll be right’. My worst nightmare would be for my illness to become my personality and I just don’t have the emotional capacity for anyone’s pity.

But when you tell stories for a living and ask others to reveal their hard truths, you bloody well have to do it yourself, don’t you.

Everyone’s favourite singer/actress/meat dress wearer Lady Gaga has it too, and has been pretty vocal about its symptoms – she even had to postpone an entire tour because her pain got so bad.

As you might have picked up on, I mostly deal with my Fibro alone and in silence – and when I do talk about it, it’s with humour because honestly if you don’t laugh you’ll cry, especially in these wild times. I mean sometimes even I have to laugh at the weird poses my body can get stuck in, or when my brain fog makes me sound like Cher in Clueless. I hate over-sympathy and fuss, and I like to think as a strong independent woman I can handle it. And in the back of my mind I know that while this affects me everyday, it’s not going to kill me and things could be far worse.

But that does mean that it’s a lonely illness, and one whose effects have been so much further reaching than I could have ever realised.

My memory is shot which actually came to the fore when I was dating – while on a second date with a guy I realised I couldn’t remember anything about his family or friends, despite him only telling me the week before. (He was quite offended but it was no great loss. To be fair, anything that man-child said wasn’t worth remembering anyway so upon reflection, maybe the Fibro wasn’t entirely to blame).

I need sleep more than I ever have, but I also can’t sleep as well as I used to (ah, more delicious irony).

I’m much more sensitive to stimuli than I used to be – for example, I get much more overwhelmed in crowds (not handy for a short person) and loud noise sometimes bothers me more than it should. Chemicals are an issue as well.

Fibromyalgia also caused my metabolism to come to a complete halt, which means I’m bigger than I used to be which honestly is fine, but still, it takes a bit of mental adjustment. Fibro also weirdly causes gut issues which is FUN, and the tiredness is sometimes so overwhelming it makes me cry.

There’s still a lot that experts don’t know about Fibromyalgia. For some people, it can manifest after physical or emotional trauma, and like heart issues, stress is a huge instigator. For others, it seems to be genetics, and for others it just pops up.

It’s almost been four years since I was diagnosed – which was its own long journey between doctors, rheumatologists and naturopaths – and while I wish this was a story of how I conquer it, it’s not. It’s a daily bitch, if I’m honest, and I don’t really help myself a lot of the time. You’re supposed to limit alcohol (hilarious) and exercise daily (even more hilarious). Still, there are things that help. Massage is awesome, as is swimming. Slowing down is also great – they say meditation but that’s not my vibe, so I just sit and focus on my breathing for a bit and that seems to do the trick.

Of course, the biggest change in my life is the reduction of stress since my exit from the magazine world, and it’s definitely helped the most. I’m lucky in the sense that now I run a business with two friends who understand when I need a bit of a break, but more importantly I’ve removed a lot of toxic, stress-inducing people from my life (For ANYTHING, that’s highly recommended).

I’m prescribed Tramadol to help deal with the worst of the pain, but I try my best not to take it on the regular. I’ve got to the stage where I can disassociate from the lower end of the pain. And hey, silver linings: my pain tolerance is off the charts, as I found out when I ruptured an anterior cruciate ligament in my knee. Here’s hoping it’ll come in handy for babies?!

It is what it is, and I’ve just come to accept that it’s a niggly part of my life that I just have to deal with. Everyone has a thing, and this is mine.

Better living, everybody.

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