As someone with Fibromyalgia, the erasure of people with invisible chronic illness has been increasingly evident. So, in this time, I though I’d write a personal account on how the pandemic affects my illness, and the chronically ill community.
I knew this pandemic would cause a “flare-up” of my symptoms, but I didn’t quite expect the severity of the flare-up, nor the true cause.
This morning, I woke up with full-body chronic pain and a migraine to match. This isn’t wholly unusual for Fibromyalgia, as chronic pain is part of my day-to-day.
Fibromyalgia is different for everyone. Symptoms vary, and flare-up triggers vary, too. For me, they’re often caused by times of stress and periods of worsening mental health. I was braced for what was going to come.
What I didn’t consider is that I can’t do even the most basic of physiotherapy of walking 30-60 minutes a day to help myself throughout those flare-ups. I can still do my stretches (if you see me punching the air in my garden; mind your business) but nothing compares to actively keeping my body working. Without being able to go out and walk for those 60 minutes, my entire body seizes up: I can’t sleep. I can’t stay in one position for more than 10 minutes else I get intense cramp. And, after sitting for too long I can barely move my legs because I simply lose feeling in them.
I could embark on my once-per-day government-sanctioned walk but being young with an invisible chronic illness holds its own problems. Not only the added vulnerability with being chronically ill, but, as a young person, it feels selfish, even though it isn’t. This is partly because people cannot actually see I am chronically ill, and out to do my physiotherapy. Plus, I don’t want to be considered as part of the influx of people refusing to self-isolate in the midst of the pandemic.
So, I just greet the pain and try to get on with my day.
Flare-ups come with worsened cognitive issues, too, otherwise known as “fibro-fog”. Essentially, this means that I forgot things, I think slower, I struggle to be creative. As a writer and game designer, I depend on all these things. So, when the fog descends, doing my job and completing my degree feels like a doomed quest.
I try to do everything I can to stay active and not stagnate in the flare-up. I took today off doing “official” word and spent it playing with my dog; I’ve been pacing my garden with her as I wrote this post. Here she is, to brighten your day:
To my fellow chronically ill comrades: I am sorry for the extra stress, the added health concerns, and the invisibility you and I are feeling in this pandemic. I hear you. I see you. I wish you all the safety, happiness, and health you can find (whilst adhering to government guideline, of course!)
And to everyone else: stay safe, stay healthy, and check in on your chronically ill pals as best you can. We will come through this pandemic together (from a socially acceptable two-metres-apart distance).
What has everyone been doing to stay active during isolation? Let’s get a conversation started, spread some positivity, and help one another the best we can!