ME Awareness: The Lost Years and Rediscovery by Kate Stanforth | 12 May 2020

May 12, 2020

By Kate Stanforth, Social Media Manager, ME Association.

It’s hard to know where to start when someone asks me “What have you lost because of your M.E.?” Like many, I’ve lost friends, education, jobs and life experiences. But, the hardest bit to stomach was losing ‘me’.

Kate with her assistance dog, Spencer.

Life before M.E. was a very different picture.

I was training to be a professional ballet dancer which meant dancing for up to seven hours a day.

I’d join in with any sports I could, my grades were high and I was happy. And that was all about to change.

At 14, after going to a party, I couldn’t walk up the stairs that evening. I was hit with unbelievable fatigue and the feeling that something was majorly wrong.

My health continued to deteriorate and a year later I was finally diagnosed with M.E. It wasn’t an easy year at all.

From being accused of being anorexic because my digestive system wasn’t working to my Mum having social services threaten her with legal action if she didn’t force me into school, it was horrific.

I’d like to say once I got the diagnosis, things got easier, but they didn’t. I ended up bedbound then ultimately paralysed in some of the darkest days I’ve experienced.

The true strength of my family shone through as they spoon fed me, sat with me and held my hand when I was too poorly for words. Thankfully though, as the years went by, I slowly improved.

I know everyone reading this will be asking “What did you do?” or “What did you take?” Honestly, it was just the way my condition was meant to go.

We had tried just about every therapy and medication going, but nothing made any significant difference to me. That’s not saying it wouldn’t to you, but for me, a lot of my life with M.E. was, and is, a waiting game.

Being ill gave me a new identity. I used to be Kate, the prima ballerina, destined for a life on stage. Then, I became Kate, who no-one saw for years and was forgotten about.

For people who don’t have a chronic illness who are reading this, being forgotten about is hard. There is a period when first getting ill when people care and notice. Why aren’t you at school? They notice your absence, send cards and gifts.

But, when you are ill for years, your absence is often forgotten. You’re no longer part of that friendship group, or invited to the parties, or remembered as still struggling just as much as you were on Day One.

Help with M.E. symptom management.
Helping you cope with severe M.E.
Energy Management and Pacing.

I will always grieve the person I used to be and that’s completely normal. I wouldn’t expect anyone to not miss doing what they love, waking up painless and not weighed down with fatigue.

But I built my new identity and it’s changed throughout the years of being ill. When I got to around year 5 of having M.E., my identity was built widely on being chronically ill and I delved into the chronic illness community.

I spent a lot of time supporting others, talking with online support groups and just trying to manage my own health. Now, year 12, my health has been kinder to me, but I also have given a smaller section of myself to my illness.

I’ve rediscovered my love for dance, my passion for changing the world (albeit from my bed) and advocating for disabled people.

I’ve lost an awful lot to this condition, but I’ve also managed to find myself again. I certainly didn’t think this was the path I would be taking in life, but I’ve still managed to have some unexpected highs alongside the difficult lows.

If you have lost yourself to this illness, it’s hard and I hear you. But I hope this perhaps inspires you to try find your (new) self again.

ME Awareness Week Monday 11th – Sunday 17th May 2020

Visit the ME Awareness Media Toolkit and download posters and graphics.

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