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Featured author – Hannah Pearl

30 June 2022

I was diagnosed with ME/ Chronic Fatigue Syndrome in 2017. Whilst some people have heard of Chronic Fatigue Syndrome, like many sufferers, I prefer the term ME because fatigue is only one of the symptoms that I can experience, although for me it is one of the most difficult to manage. The fatigue can be crushing. It’s hard to explain how different this is to tiredness, but I’ll never forget the day that I was holding a glass of water but was still thirsty because lifting it up to take a drink needed more energy than I could muster.

The cardinal symptom of ME is post exertional malaise. This means that if I do too much (and it really doesn’t take a lot), all of my symptoms get worse and it can take hours or more often days to recover. My balance goes, my tummy can be upside down, at its worst I can’t handle noise or light for a few hours, my speech slows down, I lose words and I can’t think straight.

Approximately 250000 people in the UK live with ME, and a quarter of them are housebound or even bedbound.

I’ve been lucky enough that whilst it drastically affects my life, there are a lot of people far more poorly than I am. Even so, I think I function at about 30% of a normal level and need to be careful all day everyday not to do more than I am able. This means not walking far, or fast, not doing anything more strenuous than that and not being able to concentrate for very long each day, and some days barely at all. As you can imagine, for a writer, this is very frustrating.

It took some time to write my newest book, but it felt like a very important one to write, even though I felt very guilty because I gave the main character lots of the same symptoms that I have. I wanted to use the opportunity that I have as a writer to raise awareness of the condition because it is so poorly understood and has such a hugely detrimental impact on my life.

It was a balancing act, finding a way to capture lots of the details about life with ME that aren’t easy, the impact on your daily life, loss of career and difficulty in seeing friends and family, whilst still keeping the essential elements of a romance intact. In this case, whilst Ava gets her happy ever after with her new partner, she remains chronically ill. I haven’t shied away from reflecting on how her life doesn’t look the way she expected it to, but she learns to find joy in the small things, as many of us with ME do, if we are well enough. This is a privilege not open to all of us.

We’re a resilient bunch, the ME community. We have to be, in the face of a lack of treatments, understanding and belief, frequently from the medical and benefits perspectives. We swap information, advice and support each other. It is wonderful to have that, especially when it can be so difficult to have company in person.

For more information about ME, you can visit the ME Association website.

I’ve written a book where the main character experiences ME in a similar way to me, but it can cause such a wide range of symptoms that this may feel different to others with the condition. It can be interesting and heartbreaking to read how other people are affected.

I asked on twitter the other day about additional representations of ME. There are a number of fiction books by other writers with ME that I knew of, and some more that were recommended to me. These include:

Books

In the media:

Meet me on Buddy Bench, Hannah Pearl’s latest book:

When an ordinary park bench becomes a lifeline …
As a primary school teacher, Ava Lam is familiar with the ‘buddy bench’: a rainbow painted bench where sad or lonely children can sit to show they need a friend.
But are buddy benches just for kids? Ava might have assumed so – until she finds herself sobbing her heart out on a park bench and a kind stranger sits down next to her.
The stranger, Dr Sam Stone, has a house, an impressive job and he’s even training for a marathon – all things that have become painfully out of reach for Ava in her new and scary circumstances. But whilst Sam appears to have everything figured out, it seems he needs a sympathetic ear just as much as she does. Is the encounter a one-off, or could the ‘buddy bench’ begin to represent a source of comfort and support that will become precious to them both?

Find out more about Hannah and her books