MS: A New Kind of Imposter Syndrome

I’m writing this at 4am. I had to drag myself out of bed to pee (one less-than-glamorous MS symptom: a rubbish bladder), and now I can’t get back to sleep. Insomnia is just one of many mental health minefields that came neatly packaged along with my diagnosis of relapsing-remitting multiple sclerosis in April 2021.

When I received the diagnosis, I didn’t really know what to think or how to feel. Aside from some strange, uncomfortable but generally mild symptoms – mostly involving feeling perpetually tired and my limbs and hands going numb and tingly at random intervals – I felt fine. So it wasn’t that big a deal, right? I believed this not least because my MRI scan had also unexpectedly illuminated a problem with a disc in my neck that will likely require spinal surgery in the not-too-distant future; that seemed like the far scarier thing to focus on. The doctor told me that if you were to pull any random person off the street and into the claustrophobic bowel of an MRI machine, you’re likely to find something wrong with them. Seemingly, we’re all just going about in fleshy ticking time bombs.

Soon though, the news of my MS began to sink in, like a fridge-cold knob of butter melting into the spongey holes of a warm crumpet (but much less nice). And as it did, my mental health took a battering. My first impression had been that I had the ‘good kind’ of MS, and that because I was mostly fine now, I always would be fine. I later learned, while sitting on a packed-out train and allowing myself to wander onto the NHS’s MS page on my phone, that that wasn’t necessarily the case. Hot tip: Google is not your friend post-diagnosis. It was like a sucker punch to the chest. I felt winded; my blissful obliviousness had been stolen from me. I was confronted with the prospect that in 5 or 10 or 15 years, things might change. Not definitely, but maybe.

So, I got scared. But the worse I felt – the more anxious, the more upset, the more fearful – the more I also felt that I didn’t have any right to feel that way. Because I was fine. Or at least, I looked fine. Like so many others, my illness is invisible.  

A kind of imposter syndrome took hold. As a writer working in the precarious arts industry, that’s not an unfamiliar feeling, but this was something new. I worried about talking about my MS too much, believing that everyone was looking at me and thinking, ‘What are you going on about? There’s nothing wrong with you.’ Of course, nobody had said anything of the sort to me. More than likely, no one was thinking it either – or if they were, it undoubtedly stemmed from a lack of understanding about the complexities of multiple sclerosis, rather than from a malicious desire to minimise my experience. No: the only person trying to minimise my experience was…well, me.

I berated myself over the sense of loss and grief I felt for my pre-diagnosis life. I told myself that nothing had changed, not really. I was still experiencing the same things, except now there was a name for them – a label to stick on my intermittently numb limbs. I asked myself, ‘What are you going on about? There’s nothing wrong with you. Just get over it’. Then, around five weeks post-diagnosis, as if my body wanted to prove me wrong, a relapse hit unlike anything I’d experienced before.

One morning, I perched on the edge of my bed, bleary in the early morning half-light and with my partner still gently snoring beside me. Looking across at my desk, I noticed the lamp there seemed to have grown a twin. Confused, I picked up my phone, but the figures on the screen swam and shimmered. I was seeing double. I couldn’t focus at all. I’d never had eye-related symptoms before (part of why it took so long to get diagnosed – optic neuritis is a common first symptom), so confusion and anxiety washed over me. Having been out the night before at a friend’s open mic night, I tried to convince myself I was experiencing a particularly strange hangover. Phoning my day job to tell them I couldn’t come in as I couldn’t see properly, I felt swamped by guilt, as if I was making it all up.

It soon became apparent, though, that this wasn’t a hangover. The exhaustion felt abnormal, as if someone had drained the life force out of me. My left side was numb. My balance was completely off; standing up from my bed, I stumbled hard into the door frame. I was baffled – what had just happened? Still, I told myself I was just being clumsy - because I didn’t understand what was happening. I’d never felt like this before. Now, I know that the spells of limb-numbness that had arisen over the previous four years were relapses too. But never anything like this.

I was afraid. I hadn’t been assigned an MS nurse yet, I hadn’t met my neurologist; I hadn’t even had the lumbar puncture that would formally confirm my diagnosis. Despite having a wonderful support network surrounding me, I felt completely alone. I needed help, but I didn’t know how to ask for it. So I carried on.

Weakly, I stood in my kitchen nervously chopping vegetables and hoping I wouldn’t slice off a finger. My weakened left arm wobbled under the weight of a saucepanful of boiling water. I tried to take myself out for a walk, some rejuvenating fresh air, but it quickly became apparent that trying to cross roads when seeing double does not feel like a safe bet. Eventually, I simply took myself to bed and waited for it to pass – which, fortunately, it did within a week or so. My vision returned to normal. My energy somewhat replenished itself. I went back to work and acted as if nothing had happened.

This relapse experience was a wake-up call that told. me of course something had changed along with my diagnosis. Everything had changed. A niggling suspicion about my health, an unease, had been confirmed. A maybe had become a definitely. Now, it was inarguable.

There is something going wrong inside my body.

This imposter syndrome persists. I’ve now undergone my first round of treatment – Ocrevus infusions – but at the hospital I’ve found myself feeling self-conscious, out of place. I watch patients entering the ward with the support of walking sticks and wheelchairs, while a quiet, unkind voice in my head tells me, ‘You’re not part of this community. You don’t belong here. Look at you, you’re fine’ – even as the immunosuppressive treatment designed to keep my disease at bay is introduced into my body via intravenous drip.

I’m reassured and comforted by my Ocrevus therapy – I know it’s one of the best drugs on the market. Sometimes though, I find myself clinging to the memory of that previous relapse as a reminder to myself (and others) that I have an illness. That I’m not always okay. That I need a new pace of life now, with new priorities. And that’s okay. This journey to acceptance more closely resembles a turbulent, wind-buffeted plane ride than a sun-soaked, smooth-sailing ocean cruise, but I’m slowly coming to terms with that. I’ve never really liked boats, anyway.