MS and nursing: why I had to retire

10 November 2023

Chris in nurse uniform in the past

Recently retired nurse and crime writer, Chris, was diagnosed with relapsing remitting MS in 2020. He shares his journey of finding his identity after leaving the profession.

Work has always been my release. It’s an embarrassing admission in this time of quiet quitting and pervasive disaffection in the world of work, but I loved my job.

Thirty years ago, I slid into the role of ‘nurse’ with ease, letting it shape my identity. Sometimes allowing it to take over my life, to make me feel unwell even, but never wanting to stop doing it.

I’m also stoic in my independence, always feeling the need to support myself. 

Unsurprisingly, the first things I thought when I was told that I had multiple sclerosis were, "Will I be able to carry on working?", "Can I still be a nurse?", and "Will I continue to support myself, my partner, and our needy dog?"

The answer was that I did carry on. I carried on for three years and nine months. But the time has come when I have to stop.

MS forced me into retirement a decade or two earlier than I intended. 

I had to have therapy as part of my job. Monthly sessions with a psychologist to alleviate the stresses of my job as a palliative care specialist nurse. Helping sick people can make you sick too. It’s important to offload.

Every month she’d clock my mounting exhaustion, asking me, with increasing concern, how I was managing to balance work with sickness. I’d always tell her the same thing, "I’m not really all that ill."

Yes, parts of my body are numb, on fire, itching and uncoordinated. 

Yes, I’m tired, stunned and day drunk. Well, maybe not just tired, but nauseatingly exhausted, feeling like every bone has been taken from my body.

Maybe I’m having to occasionally go and sit on the floor in the bathroom for five minutes between patients while waves of nausea pass over me, to regain my composure.

Perhaps I did have to lie on the floor of an empty office. But that was only once. Or twice, maybe more. I’m coping though. I’m really coping.

Yes, I’ve stopped having a social life, cut back on the cleaning at home and spend my days off sleeping, reading and staring blankly at the TV. But it’s fine.’

Shame and sickness go hand in hand for me. It’s double-edged. Shame at being ill and shame at not being ill enough.

We’re taught that to be ill is something we should always fight. That sickness is weak.

We’re taught that there’s a solution to it. If we eat the right things, do the proper exercises, have the correct mindset then we’ll be better.

We just have to make the effort to always be strong and not give in. The world brims with unsolicited advice of how we could try just that bit harder.

It works for some people. But to collapse into your illness is often seen as a failure. You’ve not tried hard enough. 

The narrative of just being ill and doing your best to get through each day is often strangely absent. 

The narrative of needing to sometimes have permission to lean into it is rare. 

Then there’s the imposter syndrome. After decades of being a nurse, a degree in nursing and various promotions, I was still waiting for someone to find out that I was a fake.

Inevitably, I feel the same way about illness. Maybe I’m not ill enough. Maybe I’m exaggerating a little. Maybe I could do all those things I mentioned that would make me well.

So, I tried. I tried again and again.

Inevitably crunch time came. I had to retire. 

They haven’t forced me (although my sickness record had become alarming). I’ve made that decision. I need to protect myself.

I can’t hammer my body and work, only to spend every spare minute lying down to recover enough to drag myself through the next shift. 

It’s a relief, but it’s also disorientating. I’m not quite sure who I am now. 

My identity for thirty years has been shaped by my career. I’m like a stick of rock.

Cut me open and you’ll see the word ‘nurse’ written through me. 

I’m not saying that MS means inevitably stopping work. We’re all different. It’s just what’s the right thing for me, right now.

I’m lucky in that I have a good pension, but I’m still feeling insecure. My income will change, we may have to move house, but this is the option that I have to take.

It’s a time of reforming, a moment of allowing myself to breathe and recalibrate.

I may even do some of those things that they say will make me feel better, instead of beating myself up trying to do something that I just wasn’t well enough to do anymore.

I’m optimistic. Work was my release. Now retirement is my new one. Watch this space. 

I’ll let you know what my new identity is.