ME/CFS Awareness Month: Lessons for everyone from an artist with ME

If you read my blog regularly, you’ll know that back in the late 1990s I was diagnosed with ME (or Chronic Fatigue Syndrome). Or maybe you won’t. Until quite recently I was reticent about talking about being ill on my blog, and largely only mentioned it in the most general terms and when it got in the way of regular updates. My reasoning for this was two-fold.

Firstly, it didn’t feel very professional to talk about being ill. Would people hire me, or buy stuff from me (or even be interested in what I had to say) if they knew I was ill, and perhaps not able to always be completely reliable? Would talking about illness just be seen as self-indulgent? Was that the image of myself I wanted to portray?

Secondly, there was a large part of my brain that thought that talking about illness made it more real. That describing myself publicly as someone with ME/CFS would mean that was all I was seen as (and more frightening to me, would be all I saw myself as). This wasn’t just in my online life, I hardly ever talked about illness offline either. I would go about my business with family, friends and colleagues when I was well enough to, and when I wasn’t I would generally retreat without explaining why.

In short ME had become my dirty secret. I’m not entirely sure what’s changed, maybe it’s passing 40, or my mother dying, or maybe it’s simply about realising that things really are the way they are and I just need to get on with my life and work (rather than waiting around for them to change or “improve”). For whatever reason I’m now far more willing to be open about ME and how it effects my life.

One of the very positive things about this is that I’m also allowing myself to see they ways ME has shaped my life and the good things it has taught me about being an artist and working in a sustainable way. Here’s some of what I’ve learnt:

1. Life is too short to not follow your passion (I only started drawing classes after I was diagnosed with ME).
2. Having limits makes us prioritise what really important and then get on with it.
3. A LOT can be achieved in small pieces of time (little and often is my mantra). This is why I launched the 20 Minutes a Day Challenge.
4. Instead of wasting time and energy on mindless distractions, focus on what’s important (these days I try to watch a lot less TV and keep aimless surfing to a minimum).
5. Focusing on one thing at a time is by far the best way to get the important stuff done (this recent post over on Zen Habits has helped crystalise this even more for me).
6. Persistence and perseverance are the keys to success. Keep on keeping on and eventually you’ll get where you want to be.
7. Long-term illness doesn’t need to mark an end to ambition.
8. It’s never too late to start getting your life in the shape you want it to be.
9. Enjoy the journey.
10. Eating cakes, taking naps and drinking tea makes the world a far nicer place!

(The drawing with this post was one of the first I made and published online. In those days I was more willing to talk about ME, and this drawing summed up how it often made me feel).