After two ambulance trips and a handful of terrifying episodes in which I was convinced I was about to die, I found myself beginning 2021 with a diagnosis of Inappropriate Sinus Tachycardia. Basically, a condition of elimination which is exactly as its name suggests, my heart goes fast, inappropriately. In other words, she’s dramatic.
Apart from the genuinely laughable name – and its thankfully benign nature – this condition is far from joyful. Characterised by a faster-than-normal heart rate and episodes that are triggered by pretty much anything and everything, I found myself on many a night, crouched in child’s pose on the floor, ice pack on my neck, heart racing and body shaking violently from the panic that was triggered by a pounding heart.
In a way, I’ve been lucky to even get a diagnosis so quickly as so often when women present with these kinds of symptoms, they are dismissed as having anxiety. And I do have anxiety, but I know my body and I know what’s normal and what’s new.
The first time I went to hospital I was told it was likely a panic attack but the second time, I was taken more seriously – the extremely young doctor was almost excited to give me a tentative diagnosis. The poor guy had to deal with my intense health anxiety though as I gripped his arm and asked him if I would ever run again (I never run), and he kindly told me that a run sounded like a really good idea.
After seeing a cardiologist who had the bedside manner of a teaspoon, I was told I could take drugs or suck it up. She had no time for my tears and panic, as while this condition feels terrible, it’s not dangerous.
“Just take the drugs Freya.” She said coldly as I sat sobbing across the desk from her. Without a word of warning as to what I should expect as side effects, I started the drugs. Cue three days of endless diarrhoea and a four-kilo weight loss, plus no reduction in my heart rate. I opted out of the drug route.
After sharing my experience online (one of my favourite things to do), I realised I had quite a few friends (online and in person) with my condition or a similar one (POTS). I also realised that we’ve all been given very ‘meh’ responses from medical professionals and, apart from drugs that can have side effects worse than the condition itself, there hasn’t really been much research into this condition. Despite its debilitating nature. Odd when it’s quite common.
After chatting to said friends and doing some research, I’ve found that IST and POTS are primarily found in women (70-80% of people effected by POTS are women) and it’s one of the most misdiagnosed and misunderstood conditions out there. You can imagine how shocked I was to find out that the medical community don’t take a debilitating condition that mostly effects women seriously. Absolutely shocked.
All you have to do is head to TikTok to see how many young women are suffering from these conditions and while they have absolute proof that what they’re experiencing isn’t fake (you can’t fake a 200bpm heart rate just for TikTok likes), articles like this from the Daily Mail are far from an outlier opinion.
Girls and women have long since had their pain dismissed with accusations of ‘hysteria’ (see above Daily Mail article) but what I don’t understand is how there can be concrete proof, yet we’re still told our suffering isn’t real.
Just as with other invisible conditions that effect mostly women (such as endometriosis), research has been fairly sparse, and the effects these conditions have on our lives is often downplayed.
I feel quite lucky in that my IST is fairly manageable with lifestyle changes, but I still have days I can’t get out of bed and need a babysitter for not only my 4-year-old daughter but myself.
My friend and fellow editor of Ramona, Haylee Penfold, has been living with POTS and endometriosis since she was a teenager. Haylee not only deals with excruciating pain from endometriosis but also fainting episodes caused by her POTS which means she uses a wheelchair on some days.
Haylee can’t get NDIS because conditions such as POTS can, in some cases, go away over time. But in many don’t. And in the meantime, Haylee struggles to find work because of discrimination.
“I would go for interview after interview, not knowing if I should be upfront about my disability. It seemed that when I wasn’t, I had a pretty good shot at most jobs, I’d secure a second or third interview and that is when I’d disclose my condition. Suddenly requesting a chair seemed too much to ask and I wouldn’t receive a call back.”
Haylee mentions that when she was upfront about her condition from the start, the whole interview would become about her condition and not her skills of experience.
For those of us suffering from IST and POTS, a small silver lining to the awfulness of the global pandemic has been more understanding and research to those of us suffering from invisible illness.
Long Covid has brought the worlds attention to chronic illness and invisible illness with one of the main symptoms being a rapid heartrate, which has since been identified as POTS. With the likes of Tracey Spicer sharing her experience of long covid and POTS, we now have more of a voice and hopefully, more research into this condition.
Freya Bennett is the Co-Founder and Director of Ramona Magazine. She is a writer and illustrator who lives and works on Dja Dja Wurrung Country and loves her early morning kangaroo spotting walks. You can follow her on Instagram @ramona_mag or @freya___bennett