This piece about living with chronic pain was first published on The Mighty in 2018, but it seems to have disappeared. As it’s still very relevant, but not something I often tend to discuss at length, it feels right to republish it here, with some minor updates/edits.
As always, when writing a personal piece, I write from my own life experience and do not presume to speak for any other individuals who may share similar disabilities and/or impairments.
I’ve got a lot of things wrong with me, from a health perspective. I’ve worn hearing aids since I was 11, glasses since age 13. I had braces at that point too. My teenage years were an interesting challenge in “adventures in bullying,” let’s put it that way. I was diagnosed with Type 1 Diabetes at 15 and anxiety/depression at 21. The Big One, though, was in 2011, a few years after giving birth to my two wonderful children, I was told I had fibromyalgia or myofascial (chronic) pain disorder. The (unsympathetic and apparently disinterested) consultant asked me some questions, diagnosed me, gave me a leaflet and sent me on my way. You are unlikely to cure chronic pain disorders, merely manage the symptoms as best you can.
I don’t say any of this to garner sympathy, merely to give a bit of background information. Basically I’m not the healthiest of specimens, but we all have our problems, right?
So there are a lot of things “wrong” with me, but I don’t particularly like to focus on that. I prefer instead to focus on what’s right with me. Or even, what’s “write”.
Writing is one of the few things I can always do, even when I’m not fully well. I don’t profess to be very good at it, but frankly I don’t care. Writing is my distraction and my great healer, for both my body and my mind. In the initial stages of my diagnosis I fixated so much on what I couldn’t do, and when the pain went to my hands it felt like my love of writing was being wrenched from me, just as my energy and enthusiasm were torn away. It took a while for me get back into it, which was a mistake. I’d let myself grow excuses where my backbone should have been.
I write this in the middle of a flare of some nature. Chronic pain sufferers will know what I mean by that. The sudden impact of pain finally amping up to levels that cannot be ignored. The pain is always there, and I mean always, it’s just that after a while, you get used to it. It’s not exactly an old friend, more like an annoying flatmate that moved in uninvited and who you’re now unable to evict. A flare, though, is different. A flare is more like when the annoying flatmate goes suddenly and unexpectedly violent, throws an absolute fit, trashes everything you own, sets the curtains and the carpet on fire, and then sits back and tells you it’s all your own fault. It’s usually not, but sometimes you really do believe it is.
I spent a lot of time initially trying to evict the flatmate, all to no avail. Mostly my attempts made it worse. Then I tried to avoid them and carry on as if they weren’t there. That also wasn’t the best of ideas. It turns out that if you try to do that, they’ll find a lot of more annoying ways to make life harder. Now I sort of accept them, keep an eye on them at all times, while making sure they always have their own milk in the fridge and a place to kip. I don’t like it, but I’ve learned it’s better to try to keep them happy. Me and my unwanted chronic pain flatmate, we can get on like a house on fire — and by that I mean: people screaming, chaos everywhere, destruction, doom.
A flare can be the result of three things: something I’ve done; something I’ve not done; absolutely nothing to do with anything I’ve done or not done at all. It’s always fun trying to figure that out. I say fun, but of course what I mean is, “I try to keep my humour about me while I assess the situation, otherwise I would spend all of my time curled up crying in bed.”
My reaction to a flare usually goes something like this. The first day is mostly an “uh-oh” kind of feeling. I often know it’s coming before it hits, but not always. Even if I’m suspecting it, when it arrives I’m never ready, and I absolutely always have thoughts of “not this again!” and “why me?” I’ll be angry that my plans have been changed for me, determined to push through. By the second day I will still be determined and angry, but I will have been forced to slow down, to accept that this is here again. I will be sad and cry. By the third day I most likely will have spent at least 24 hours strapped to a TENS machine and/or taking pain killers. I’ll be more grumpy and tired and might talk through gritted teeth. People may offer me hugs but I won’t want them, I’ll feel too prickly. The anger will have changed more to determination and resilience.
After that, I’ll just get on with it. There is no telling how long it will last, and beyond pacing myself and accepting the pain, I don’t have the luxury nor the desire to become a bed or sofa-bound invalid. I’ll worry, I always worry, that maybe this is the one that won’t go, that won’t pass with time. If it’s a particularly bad flare I may start to think about what changes I’m going to have to make again, if I’m going to have to alter long-term goals. What the pain is trying to take from me again, and if I have anything left to give it.
Finally, after an indeterminate period of time has passed, the flare will abate. It won’t go completely, no, that annoying irrational, unpredictable flatmate will be kicking back on a comfy chair, cup of tea in hand, nodding at me to let me know that yes, this time they’ve calmed down again. Next time I might not be so lucky.
Knowing now that writing and creating are the things that keep me sane and happy, I also know how to utilise them and explore with them, and they help me heal. I finally realised I didn’t have to be someone ‘what wrote real good’, there is no place for judgement or peer review here, it is simply about the joy and peace of doing something that connects me to myself.
I started Well-Written, a collective and blog for women in 2017 which focused on writing for wellness. It was very much a labour of love, but it spawned some wonderful physical meet-ups and eventually some workshops too. I genuinely believe it helped others as much as it helped me. Its aim was not to specifically focus on the things that ail you, but to use writing to overcome those ails. To use it as a form of therapy, freedom, or creative introspective of oneself. It offered ways to empower and embrace, to allow women the time and safe space to use their own words to help heal them. Clearly, this had its limits, yet I do very passionately believe that without being able to write about such things, I would not be as capable of dealing with all that life has thrown at me.
Pain may well be a part of me for the rest of my life. I acknowledge and accept that, even when I’m tired and demotivated, when “resilience” almost feels like a dirty word. And it doesn’t mean I ever have to like it or feel comfortable about it. My incorrigible, unwanted flatmate has taught me that often to survive and thrive means to compromise, but for me it never, ever means giving up.