Enjoying Ill Health: or, Medical Gaslighting and What Happens Next

As I sit here and type this, my right hand is significantly colder than my left, and it’s worrying me. I know that the likeliest reason is because I use the mouse with my right hand, and so it’s elevated more often than my left. But I also know that there are, potentially, other reasons. Like a blockage somewhere that’s affecting my circulation, maybe. It’s unlikely, but it’s possible.

This is the kind of thought that makes people roll their eyes. That, if they know me well, people will put down to my ongoing issues with anxiety. And, believe me, I know that anxiety is a big part of it. When I have symptoms I don’t understand, they make me anxious, and I look up what they might be, and, sometimes, I end up kind of hoping that I actually have the thing because then at least there’d be a reason.

That last part is something a lot of people really don’t get – and really get offended by when you try to explain. I titled this blog after a catty comment in the very last Poirot book, Curtain, where someone says of the murder victim (before she dies) that “she certainly enjoys ill health”. I don’t identify with the character – she’s pretty dreadful – but I use the quote because I’ve had it levelled at me. The thing is, there’s a big difference between hoping for a diagnosis, even a bad one, and wanting to be ill.

I’ve written before about my frustrating history with gynaecological problems, and in particular my ten-year wait to get a diagnosis for the endometriosis and PCOS that was shredding my insides every month. It wasn’t until a few years after finally receiving this diagnosis that I heard the term medical gaslighting, which struck such a chord with me. Being told for years that your pain is normal, being made to feel weak and silly for even saying that you feel it, has an impact. After a decade of that, getting the answer that, yes, you were right, things are wrong, and we’re going to try to fix them, is more of a relief than you can imagine – unless, of course, you’ve been there too.

This experience taught me an important life lesson – that my body can go wrong, that people won’t necessarily believe me when I tell them about it, and that their lack of belief doesn’t mean that everything is actually okay and that I’m imagining things. This is especially true when the symptoms that are apparently ‘okay’ don’t add up to wellness. I’ve been reassured I’m not anaemic, even though I get dizzy, breathless and low on energy every time I have my period. I’ve been told that there’s nothing bad going on in my uterus now that I’ve had my endo lasered, even though I have to be careful how I turn over in bed, otherwise I end up curled in a ball while pain stabs through me. I’ve had it implied that everything would be fine if I just lost a bit of weight (seriously, the overlap between Diagnosis Fat and medical gaslighting is real garden of delights).

After decades of this, it’s hardly surprising that I freak out about every little symptom, and that I’m reluctant to accept an answer of ‘it’s nothing to worry about’. When I was younger, my heavy and irregular periods were ‘nothing to worry about’. The pain that left me unable to stand up straight was ‘nothing to worry about’, either. It was all a natural part of puberty, until eventually, after I’d nagged and pushed my way into some proper testing, the people in charge of dishing out treatment agreed that it wasn’t.

The thought at the back of my mind is always ‘what if that happens again?’ That innocuous-seeming symptom could be nothing – or it could be something serious that I should be getting treatment for, treatment that would drastically improve my life if I get it soon enough.

And despite this worry, I’m still experiencing the flipside of the medical gaslighting coin – the one that encourages me to ignore pain or other feelings of illness because ‘it’s probably nothing, it must be normal’, even though I’ve had first-hand experience of a time when it wasn’t. Recently, when I turned over in bed wrong and had to curl up whimpering for a few moments because of the stabbing feeling in my lower abdomen, my partner, very concerned, asked me how long it had been going on.

“Oh, God, years,” I told him, as I unwound myself and sat up. “It’s just one of those things.”

Living with this constant battle between ‘you need to see a doctor about this’ and ‘this isn’t worth seeing a doctor about’ is exhausting, and I can’t imagine it does much for one’s general health. I can only see one way to combat it – and that’s for people, especially medical professionals,* to start off from a position of believing someone when they say that something’s wrong, and to only revise that position if they have hard evidence that the person is faking or exaggerating. (Hey, that’s a pretty good approach to take whenever someone’s telling you something that has to do with their body and things that are happening or have happened to it!)

Medical gaslighting has an impact long after it’s over and you’ve finally got the treatment you needed. Listening and believing when people tell you something’s wrong – even if it’s a silly-sounding complaint about a slightly colder hand – goes a long way towards lessening that impact.

 

*Yes, yes, I know, not all medical professionals. I’ve had some brilliant doctors and nurses in my time, and I love, value, and fiercely defend the NHS. I’ve also had doctors who ignored what I told them, lost my notes, thought I was a different patient, refused me treatment that I was begging for because “You might want to have a baby one day”, and, in one case, outright told me to “just have a baby and that should sort it all out”. Medical professionals are people, and some people are prejudiced, incompetent twits.

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About Alice Nuttall

Alice Nuttall is a caffeine-guzzling knitter who divides her time between Oxford and the various worlds in her head. She is the author of a YA fantasy novel, Spider Circus, and three webcomics, Footloose, Cherry, and Black Market Magic, as well as several short stories.
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