I was diagnosed with Fibromyalgia a long time ago. I just turned 44 and I was diagnosed around 20 by a rheumatologist. He said I was ‘too young for medication’ told me to ‘exercise’ and sent me on my way.
He didn’t specify what sort of exercise and exercise for chronic pain isn’t the sort of exercise a 20-year old mind thinks of. So I immediately did way too much and flared insanely… and really had a hell of a time with that such that I ended up giving up on that idea for a long time. I didn’t realize, at the time, I Was exercising by walking to university every day and doing consistent activities like that.
So there was a whole lot of things I wish I’d known about Fibromyalgia when I was diagnosed
There was no social media around to chat with people or get support or ideas either. I was sort of just winging it with very little idea where to start. And a whole lot of isolation due to the stigma around fibromyalgia at the time. I was coping with it but I sure wasn’t telling people I had it.
Obviously, I wish I had even a little guidance on what sort of exercise to do and how much. That the physical activities I was doing were good for me and that I should maintain those. And what Not to do would have been great. How to choose what exercises to do and someone to tell me to start very slow and increase it slowly as well.
I had a ‘normal’ person’s concept of exercise and that meant I did way, way too much for my fibro body to handle and flared for days and days after. Then wondered what the hell I did wrong. And why I couldn’t handle it. If I had known that my activities of walking to university every day, walking my dog, and basically walking everywhere I went back then, were good physical activities for fibromyalgia I would have maintained that. But I had no idea.
I didn’t really have a concept of the impact fibromyalgia would have on me. I had it before I was diagnosed, of course. I had been struggling with it, adapting to it, and starting to cope with it in order to go to university. That was difficult to adapt to and it took me a bit but when I did, I was coping quite well.
So, in my mind, I was doing awesome and that was the way it would be forever. But chronic illnesses are infinitely unpredictable and so is life. There is no such thing as stability. My concept that it would affect me physically but not cognitively or emotionally was pretty naive. It certainly has affected me cognitively and emotionally. And how it affected me in university is not at all the same as how it impacted me in the workforce, which just is a lot less flexible and more painful. Or when I had more than one chronic pain condition to deal with.
I figured out pacing right away when I was younger. But then I went into denial when I went into the workforce because it is impossible to pace and work… you can’t. It is work through it, and crash after. Work- crash. And that is always the problem with that. No capacity to pace. Always exceeding my limits. So pacing is a lesson I have learned is necessary but most workplaces are far too inflexible to enable me to do it.
There is no rule that says once you have a chronic illness you are done. That’s it. No more illnesses. Instead, it seems it makes you More likely to get comorbid chronic illnesses. And then they stack up and really compromise your capacity to cope.
I think I was coping fairly decently with fibromyalgia back in the day, once I figured out how to pace and the sort of jobs I Could Not Do. Even when migraine disease jumped on board. But then the migraine disease went chronic and that isn’t even all that surprising when you consider some of the sensitivities of fibromyalgia and some of the sleeping issues of fibro and then the triggers of migraine… sort of correlating to each other.
Anyway, after a while they all sort of stack up and compound on each other. I don’t think anyone is prepared for the impact of all that when they are diagnosed because none of us can anticipate any of that happening in the future. But I sure wish I had known how unpredictable chronic illness is so that I would be more resilient to change. Just knowing how resilient and flexible I would have to be in the future would have been valuable to know.
As it was they stack up and the pain compounds. Coping and adapting to all that while working is extremely difficult and instead, you just try to push through hoping for some sort of effective treatment… that never comes. And things just get worse and worse. Because you never have a break or time to rest and recover in order to adapt and cope effectively.
I think if I had seen that coming, and of course that is impossible, I never would have worked in such an inflexible industry but rather one that was far more flexible for its employees. Not every industry really does well accommodating different disabilities. Not everyone makes space for us but rather tries to push us out of spaces. And that is very demotivating and destroys our self-worth. But there are work industries and spaces that are flexible in nature that would be quite accommodating for all sorts of disabilities. During the pandemic for example certain tech companies adapted to people working at home insanely well and found it a viable system, and welcomes it, or flex work- that is the sort of industry someone with a disability could adapt their chronic illness to in many ways – perhaps in such a way that they would never work themselves into worse physical health and permanent disability. Because work/life balance is essential and without it, we can burn out fast.
I wish I had known right from the beginning that my entire well-being is vital. My physical, mental and emotional well-being are all important. Because in a lot of ways society sort of makes us think we have to push through symptoms and pain and just ‘fit in’. So I did. And that really does not work well at all, because nothing gets managed and everything gets worse.
I wish I knew that I should put a lot of focus on work-life balance, my own self-care, and my mental well-being from the beginning. With an understanding that medication will never really get you that far. But early on I had this belief that medication would help a whole lot more than it ever would. Medication has its place, of course, but it is just a fraction of the whole treatment process.
If I had known this I would have put a lot more time and effort into exploring alternatives to help with my well-being and self-care in addition to medication. And I would never have allowed myself to remain in a job that was destroying it. I would have focused on overall balance.
But I learned the hard way with no guidance, no advice, no support- nothing at all. Other than my awesome mother and her advice and support. And friends and my support system. But for quite some time I was just bouncing from thing to thing trying to find what may or may not work a little bit. Never really figuring anything out. It was a long and slow process.
You figure out what you are doing all wrong. And also what works for you. But, man, I sure wish I could have figured this all out a Long time ago.