Inspiring
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Inspiring

From InterAction 109, published Christmas 2021

The bright side of having a chronic illness

Swap my life with a healthy person’s? Not a chance, says Ellie Finney.

Towards the end of Netflix series The Good Place, there’s a scene where the recently deceased have to pass a test to see whether they go to heaven or hell. This trial is specifically designed for them, featuring all the demons they need to face and giving them points for how they handle the situation. M.E. is my specifically-designed trial. It’s everything my character finds difficult; resting, being dependent on other people, not achieving anything and being misunderstood or disbelieved by other people.

So where’s the bright side?

Although I’m often jealous of healthy people, I wouldn’t swap lives with them. I’d rather keep my life, difficult as it is, because I get to be me. Lots of people say it sounds like hell and they’d never be able to cope, so they’re always surprised to hear that I’m happy. Despite not being able to do any of the things that make me happiest - going on holiday, watching live football, running, eating out - I am happy.

Because of my chronic illness, I get to appreciate things in a new way and find the joy in the little things. I’ve been housebound for the past two years and I’ve watched every season change from my bedroom window. Life stopped being a busy rush of colour and started being slow and empty. I’ve had to find things to be grateful for when I can barely move because of the pain and fatigue.

That’s not to say there aren’t tough times, but after months of feeling sorry for myself and counting all the reasons it was unfair, I gradually decided that I needed to stop getting lost in my own negative narrative.

Here’s how I found joy while living with M.E.

Gratitude

One of my best friends gave me a bit of advice that I’ve followed every day for three and a half years: keep a gratitude journal. I was sceptical to begin with but it’s changed the way I view the world. It’s made me a much, much more positive person. It’s made my brain focus on sunshine and not cloud. It’s made me reflect on what I did right more than what I did wrong. It’s changed the pathways in my brain.

At the end of each day I think of three things I’m grateful for. It’s difficult when I’ve had a bad day and I’m barely able to make a cup of tea, but I always find something. Sometimes I flick back through the journal for inspiration and notice that it’s always people I’m grateful for.

Checking my privilege

I know this doesn’t work for everyone but it works for me. Russell Brand recently said on a podcast that other people’s suffering doesn’t minimise your own. But remembering that there are people out there with terminal medical conditions, people living in war zones, people who can’t afford to feed their kids, makes me put my suffering into perspective.

It’s all relative, of course it is, but just because my life is hard in one way doesn’t mean it’s not easy in so many others. I can live on my savings, both my parents are still alive and are my safety net, I have friends to keep me entertained with voicenotes and I’m the kind of person who can pull themselves out of a negative tail spin reasonably quickly.

Feeling the feelings

To begin with, I focused a lot of energy on being positive when I didn’t feel it. I thought thinking positive when feeling sad, frustrated or angry would make the feelings go away, but it just pushed them further down. Eventually (and usually at particularly inconvenient times) they would spring back up again. Emotions exist to help us; they are there to be felt. Only by acknowledging and ‘leaning in’ to these feelings did I come through them.

Once I’d given myself permission to dwell sometimes, to cry sometimes, to feel like smashing up all the plates in my kitchen sometimes, the feelings went away faster than I expected. Something would always happen to make me smile again. Emotions are transient and don’t last forever, especially the good ones. I’m learning to ride the wave and appreciate the highs and greet the lows with understanding and grace.

Realising what matters When

I’m better, and I believe I will get better (eventually), I’ll never lose the gift of knowing what it’s like to be disabled. I’ll never take the ability to get up and walk on my legs for granted. I’ll never complain about not having enough time or being too busy, because I understand that being busy is a privilege of the healthy.

I used to be very critical of my own body (particularly my thighs) even though I was two dress sizes smaller than I am now. Not anymore. Last week, I couldn’t fit into some pyjama shorts I’d worn last summer and I just laughed. As long as my legs work, I don’t care if they’re thin or toned. Money can’t buy that kind of perspective.

I used to get so anxious about the prospect of being single in my thirties because everyone else around me was getting engaged. Now I couldn’t care less. It took me an entire year of being housebound to realise I don’t actually want to get married. I’ve always found the hysteria about weddings silly and boring, why didn’t I realise then that it wasn’t for me? It’s like I’ve excused myself from the race and it feels so liberating.

Redefining success

Sometimes I still get caught up in wishing I was normal, but for the most part I’ve come to accept and even take pride in being different. My life is different from almost everyone I know, so that makes me interesting to other people. I have to do most things differently from other people, but that makes me more creative. I have to problem solve in all aspects of my life, so I’m growing an area of my brain that will come in handy when I’m well enough to work again.

Success is no longer getting promoted; it’s listening to my body and acting accordingly. A productive day is resting and recharging in the hope I might manage more the following day. A fulfilling day is hanging the washing out, noticing the smells and sensations of being out on my balcony. I don’t follow society’s narrow and prescriptive view of success any more, I follow my own personal version.

M.E. has given me new eyes to see from. Sunshine on my face makes me feel the purest of pure joy, so does the smell of sun-dried laundry and the sight of my balcony hydrangea growing. A favourite TV show or novel is more compelling and comforting than it ever was. Baths are the world’s biggest pleasure. I love my friends and family so much that I can well up just thinking about them. I’ve learned a catalogue of crucial lessons in a short space of time that have set me up for my thirties; how to slow down, how to prioritise what really matters, how to appreciate the life you have and not constantly wish to change or improve it.

I wouldn’t swap my new perspective for fifteen years of wellness.

Books that have helped me on my journey:

  • The Chimp Paradox - Professor Steve Peters
  • The Power of Habit – Charles Duhigg
  • Metamorphosis – Polly Morland
  • Mindsets – Professor Carol Dweck
  • The Obstacle is the Way – Ryan Holiday
  • A Still Life – Josie George
  • The Long Walk to Freedom – Nelson Mandela
  • Big Magic – Elizabeth Gilbert