The Bizarre Prevalence of Invisible Illness Imposter Syndrome
It might sound strange, but an extremely common experience for those living with chronic illness is regularly asking yourself, ‘... what if I’m faking it?’
Welcome to Chronic and Iconic, Junkee’s monthly column about chronic illness and disability, written by Chloe Sargeant.
It might sound strange, but an extremely common experience for those living with chronic illness is regularly asking yourself, ‘… what if I’m faking it?’
“You know, sometimes I wonder if maybe the aches and pain I have every day are actually really normal and everyone’s just tougher at dealing with it than I am. And other times I wonder if there’s actually nothing wrong with me, and I’m just faking being sick.”
A fellow chronically ill friend said this as she was sitting across from me at the pub one day, and I nearly choked on my Guinness. I had never heard someone say those words out loud before; I had never had someone so succinctly say my thoughts word-for-word back at me like that. And that was the moment I realised that those self-doubting thoughts — which I had for years thought were a deep dark secret of mine that I should never speak aloud, lest people would cast even more doubt over my invisible illness — were common. This was not my anxiety-muddled brain, this was something that many of my disabled and chronically ill peers experienced too.
It turns out that this self-doubt is something that plagues the chronic illness community — particularly those invisible illnesses or disabilities that are dynamic* — and it’s taken me a long time to process why we question ourselves like this. Why are our brains determined to tell us that what we’re going through isn’t actually real?
*’Dynamic disability’ is a term that means a disability that changes in nature from day to day. For example, I identify as having a dynamic disability because some days I am completely mobile and can walk unassisted. But other days, I am immobile and either cannot walk or need to use a mobility aid. My disability looks totally different from one day to the next.
“You don’t have a chronic illness, you’re just mentally ill.”
“You’re faking being sick. You just want attention.”
“You’ve convinced your doctors you’re sick, this is just a cry for help.”
“This is normal, everyone experiences it, you’re just too weak to deal with it.”
“There is absolutely nothing wrong with you, you’re just lazy and want an excuse.”
These are the sorts of thoughts I’m talking about. It sounds somewhat similar to that of my Generalised Anxiety Disorder, the voice in my head that tells me that all my mates hate me and I should just stop bothering them. Except this other voice, which tells me I am faking my chronic illness, is slightly different, and has only existed for the last six or so years of my life. It certainly wasn’t there when I first started developing the symptoms of my chronic illness — it came some years after.
“I have this recurring anxiety that I’ve somehow tricked my doctors into diagnosing me even though there’s so much I couldn’t possibly have faked like all the joint damage that shows up on MRIs.”
When I realised that my illness and the self-doubt didn’t begin at the same time, that was what made me consider that ableism was the catalyst for this new shithead voice in my brain. Ableism in a variety of different forms, but all of them rooted in distrust and doubt.
A heartbreakingly common experience when you have an illness that is invisible is people not believing that you are sick or in pain, simply because you don’t look sick or look like you are in pain. You look completely able-bodied, just like they do. That sort of ‘I’ll believe it when I see it’ mindset often leads to people vocally expressing doubt about your illness to your face. (Yes, really — people genuinely seem to have no qualms with telling you, unprovoked, their uninformed thoughts about your body!) When that happens over and over again for years, you eventually do start to question if perhaps they’re right. Surely if it was that bad, people would be able to tell that you’re sick… right?
Not necessarily. Many of us with invisible illnesses and disabilities have tried to mask our health issues, keep them hidden from society. This happens for plenty of reasons — like, being nervous that your boss will think you’re unreliable at work and you’re scared of losing your job, or you don’t want to worry your family and friends. Sometimes it’s simply that internalised ableism has reared its ugly head, and you feel shame for being chronically ill/disabled (it sucks, but it happens and I’m not going to sugarcoat that) – so you put on that able-bodied mask and go about your day pretending you are in tip-top health. But that mask can often end up working against you: when you do tell those people about your health, they don’t believe you’re sick because you’ve been so good at hiding it from them.
‘Every time I manage to do something that’s hard (for me, that’s leaving the safety bubble around my house) I feel strongly that I actually can do things, I’m just lazy or don’t want to feel uncomfortable.’
I masked my illness for a long time, and I did it so well that it caused not only previous workplaces and loved ones to be skeptical of my illness, but it also ended up causing me to doubt myself — if I was so good at pretending I wasn’t sick, maybe I just actually wasn’t sick at all? Was I pretending to be well, or pretending to be sick?
My imposter syndrome thoughts of ‘not being sick enough’ and ‘faking being sick’ also crept into my brain after my many years of being told I was ‘perfectly fine’ by a merry-go-round of various GPs and specialists. My bloodwork was all normal, all my scans were fine, ultrasounds showed nothing. I was in ‘perfect health!’, they all said. Except I wasn’t; I was in widespread severe pain, experiencing tremors, fatigue, nausea, and various other symptoms. But doctor after doctor told me that there was nothing wrong, and after being told a certain amount of times that you are perfectly fine and perhaps ‘it’s all in your head’, it’s no surprise that you start to doubt not only that you’re in pain, but you also start to doubt your sanity.
After my realisation that ‘imposter syndrome’ was not just my brain playing tricks on me but something others in my community went through, I asked some chronically ill people if they had ever had similar thoughts — the response was overwhelming.
“I have this recurring anxiety that I’ve somehow tricked my doctors into diagnosing me even though there’s so much I couldn’t possibly have faked like all the joint damage that shows up on MRIs.” — Amie Gill
‘Every time I manage to do something that’s hard (for me, that’s leaving the safety bubble around my house) I feel strongly that I actually can do things, I’m just lazy or don’t want to feel uncomfortable.’ — Anna Spargo-Ryan
“Sometimes I think ‘it’s not that bad, it can’t be, I’m just being lazy, I can do the thing, I should do the thing’. Then sometimes I’ll actually do the thing [and] it’s a roll of the dice as to whether the pain comes during said activity, a couple hours after or [if I’ll be] bedridden for the next day or few. It’s only then that my messed up lil brain goes ‘oh yeah, guess it is that bad’.” — Kara McCloy
“I felt this for years. I would be crying with pain and telling myself ‘It’s not that bad, you can push through, everyone else manages, why can’t you?’. Years of being told my period pain (later diagnosed as endometriosis) was “normal” made me feel like I was weak, instead of sick.” — Lynne Renshaw
“When the pain meds kick in and I have a reprieve I wonder if I’m just over playing it. Even though I’m limping, wincing and crying in the privacy of my house, I feel like I’m “putting on” the limping and wincing when I’m in the presence of others. It doesn’t make sense when written down, but I’ve internalised a whole bunch of ableism.” — Jacinta Richardson
“Sometimes I feel like I’m just a lazy loser and that I need to just snap out of it. Or I feel like my colleagues and sometimes friends think that I’m putting it on, which makes me feel like it’s all just something that I need to overcome. I blame capitalism and the constant expectations of productivity for the way I beat myself up.” — Mitzi McKenzie-King
Invisible illness has its own unique set of challenges when it comes to ableism – from doctors not believing us, to difficulties proving our disability in order to receive welfare — and so it’s unsurprising that over the years your brain has absorbed all this societally-ingrained ableism, and your brain uses it against you. The only way we can challenge and move forward through this internalised ableism is by talking openly and honestly about it as a community, and coming together to lift each other up when one of us is going through it.
“Sometimes I feel like I’m just a lazy loser and that I need to just snap out of it. Or I feel like my colleagues and sometimes friends think that I’m putting it on, which makes me feel like it’s all just something that I need to overcome. I blame capitalism and the constant expectations of productivity for the way I beat myself up.”
So, if you are someone who is experiencing chronic illness / disabled imposter syndrome, tell that annoying voice in your head screaming ‘faker!’ to shut the hell up, and instead read the below words to yourself:
You are not faking your pain, you are not faking your fatigue, you are not faking your illness/disability. You are not faking on your bad days, you are not faking on your good days. This is real; you know it, your body knows it, and your brain knows it. Your illness/disability is real and valid.
That voice in your head is just repeating the crap it’s learned from societal ableism, so do your best to ignore and replace it by telling yourself this: “My chronic illness / disability is real. I am chronically ill/disabled on both the good days as well as the bad. I am chronically ill/disabled and I am not ashamed, I am doing my best and I am proud”.
Chloe Sargeant is a Sydney-based writer, reporter, illustrator, radiantly queer scallywag, noodle enthusiast, and one half of the Chronically Fully Sick podcast. She’s currently writing a book about living with fibromyalgia, and you can find her at @chlosarge on tweeters/insta.