Invisible Illness, Gaslighting And Why Healthcare Is A Feminist Issue

The story of insecurity in chronic illness and self-advocacy in a bias healthcare system …

Words: Sarah Fender

Illustration: Ilenia Zito

“According to the Oxford English Dictionary, to gaslight is to “manipulate someone by psychological means into doubting their own sanity”. Most of us have heard of gaslighting in the terms relationships, but what do you do if it’s the medical professionals meant to help you who gaslight you? What if your doctor convinces you that everything you’re feeling is all in your head? Not serious? Not requiring help?

For years I had felt unwell. I’d woken up feeling fine, got dressed, left the house for work only to become nauseous on my journey and faint. I decided to go part-time at work because my symptoms became too much - I used all of my energy commuting, and focussing at work that my weekends left me bed-bound, fatigued and in pain. I started to say no to more and more things and to isolate myself.

Diagnosed with migraine and then chronic migraine as a teen, I had some help from doctors. But when I started to experience chest pain, weakness, fainting, I was left with nothing. My test results were normal, so in the doctors eyes, there was nothing else wrong with me.

When symptoms kept happening, I became reluctant to even mention them, beginning to feel that they couldn’t be important if the doctors didn’t deem them to be. I started doubting myself, and whether or not I was even experiencing them - maybe I’m just anxious? One doctor told me “some girls just faint sometimes”, and so I left it at that.

Through the internet I found a community of women also suffering with chronic and invisible illnesses and disabilities. So-called ‘warriors' sharing their battles with illness and their fight for diagnosis and for treatment. They offered so much love and support for those of us still ‘undiagnosed’ and in need of help. Medicine hadn’t given me answers or relief - but these women believed me. So I did what every doctor hates, and I started to do my own research online. Through the chronic illness community, (and with some help from doctors-worst-nightmare Google) I learned about Postural Orthostatic Tachycardia Syndrome (or PoTS for short). PoTS is an autonomic condition categorised by an abnormal rise in heart rate after sitting or standing, which can lead to feeling light-headed, dizzy or even fainting (amongst other things). I knew instantly “this is it, this is what’s wrong with me, and I’m not imagining it”. And so I went back to my GP armed with the knowledge of this condition, and what tests were needed for an official diagnosis.

During my appointment, the doctor googled the condition having never heard of it himself, he agreed that I matched the symptoms, but finished the consultation with “but it says here that’s it’s not life threatening so…”, and that was that. At the time I was too upset to question him further. For so long I’d waited for answers, only to be dismissed again once I though I’d found them.

Upset soon turned to anger. Why was I being dismissed again and again? I remembered my dad previously going to see the GP once with chest pain, and the doctor calling an ambulance for him. Why was there no sense of urgency for me, despite having experienced chest pain myself on multiple occasions? Why was my unexplained fainting not deemed serious? The only difference I could see was that I was a young woman, he was a middle-aged man.

An incredible 75-80% of PoTS patients are women, and sadly for me “disease affecting mainly women remain largely a mystery: understudied, under-treated and frequently misdiagnosed or undiagnosed. This has major knock-on effects for both medical practice and the health of women”, Garbrielle Jackson of The Guardian writes.

A simple online search and I came across more articles, studies and shared experiences of women who had experienced delays in diagnosis and treatment, and sometimes no treatment at all despite experiencing the same symptoms as men. A study highlighted by the British Heart Foundation found that despite more than 35,000 women being admitted to hospital each year with a heart attack, women had a fifty per cent higher chance of receiving the wrong initial diagnosis than men.

The average wait for pain relief for a man in A&E in 49 minutes - for women it’s 65.

In their study 'Women With Pain’, researchers J.Crook and E.Tunks found that women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men.

Being a woman was not my only barrier to diagnosis and treatment. Both migraine and PoTS are ‘invisible’ disabilities, and in the research paper ‘Beautiful Faces in Pain’, T. Hadjistavropoulos found that doctors subconsciously assume that people who look ‘better’ on the outside are healthier and subsequently require less treatment. So despite my illness having a physical impact on me, doctors could not see my pain, my blurred vision, my nausea - and so they did not treat it.

Thankfully I have since seen a doctor who referred me for relevant cardiac and autonomic tests, and I have officially received my diagnosis of PoTS - but why did I have to suffer years of fainting, insomnia, palpitations, pain, weakness, blurred vision, fatigue to receive any help or acknowledgement? The delays I experienced have clouded my trust in doctors, and in others around me. I still find myself reluctant to acknowledge my symptoms - often suffering in silence amongst friends and colleagues - because I have a lingering fear that I will not be believed or understood.

Healthcare is a feminist issue, but it shouldn’t be. Regardless of gender a person should be able to see a doctor and receive help. I wish that I had been more outspoken in my fight, going forward I most certainly will be. Just know that if yo u’re also struggling with something - I believe you.”

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You can find Sarah on Instagram at @sarahkayxx or read more of her work on her blog selfcaresunday.uk.