top of page

How to live with Fibromyalgia

I promise this won’t be a pity party, but as it’s International ME/CFS and Fibromyalgia Awareness Day on 12 May, I thought it wouldn’t hurt to share my experience with Fibromyalgia. Aside from being tricky to say, it’s also a constant pain in the metaphorical (and sometimes physical) arse.

At 17, after several months of chronic and crippling jaw pain, I found myself in a hospital consultation room with a pleasant woman who told me I had Fibromyalgia. The only advice she gave me at the time was to eat soft food and not to yawn. She didn’t tell me that what I had was in fact a chronic fatigue condition that also causes muscle pain in other parts of the body, and Irritable Bowel Syndrome (IBS).

So I forgot about this vague diagnosis and went on with my life, and only in my early twenties did I start to really understand the effects of this condition. I’d battle with my closing eyelids as I sat at the desk of my first proper job in London, my whole body feeling like it was shutting down, while my shoulders seized in pain.

I’d forget the second half of sentences as I spoke them, scrabbling round my foggy brain to try and remember what it was I needed to say. By this point I’d already developed IBS, so most days I had a distended and painful tummy. The worst part, was that I didn’t link this in with the diagnosis I’d had at 17 because none of this was mentioned. I just thought I was a little broken.

Only a few years ago did I start to piece everything together. And the more I researched the condition, the more validated and relieved I felt. Because now all these issues had a name, and I wasn’t just feeling shit for the sake of it.

When I couldn’t concentrate at work; couldn’t remember important information; couldn’t keep my eyes open; couldn’t walk up stairs easily; couldn’t shake the intense pain in my neck and shoulders - I could label it as a ‘bad-Fibro day’. I could decide to take it easy. I could hope that the next day would be better.

And now I’ve become well-versed at living with the condition. I know that if I eat too much processed sugar in a day, the next day I’ll probably feel fatigued and foggy. I know that if I drink alcohol two or more days in a row, on the third day my whole body will feel sore to touch - like I’ve been trampled by a herd of cows. I know that even if I’ve had eight hours of sleep, I could feel like I’ve only had three because often Fibromyalgia disrupts the quality of sleep.

But critically, I’ve learned the importance of being kind to myself, and honest with others. Last year was incredibly stressful at work. There were many days where I was fatigued and foggy and bloated, but pushing through anyway. This left me feeling incredibly low, like I simply couldn’t do my job.

When I finally opened up (read: broke down) about my condition, I received nothing but patience and understanding. I could be honest about sometimes needing a day in bed in order to be able to work well the rest of the week. I could ask to take an hour during the work day every week for six weeks to complete a Cognitive Behavioural Therapy course, to support the mental health effects that come with living with a chronic condition.

So if any of this sounds familiar to you and you haven’t yet tried to seek a diagnosis, please do. No one gives us a medal for battling through without support or coping strategies.

bottom of page