Dear Diagnosed, Don't Dismiss Every Symptom as Fibromyalgia
Fibromyalgia syndrome has many symptoms including nausea, fatigue, chills, numbness, tingling, sweating, and pains ranging from radiating to stabbing to pins and needles pressing. Digestion, sleep, and moods may vary if not actively maintained and managed, and even then we are still human.
After years of these fluctuating flares and symptoms, it is possible to become desensitized to feeling unwell. It is possible to be unable to distinguish the difference between a flu and a flare. It is possible to ignore serious signs and symptoms of other conditions or even emergencies. I didn't realize I was experiencing a digestive infection and fever until I was literally doubled-over at the end of a hiking trail in the woods with gag-inducing abdominal cramps and full body sweats. Jello limbs. Sips of air breathing. Actually, it wasn't even then that I realized I was sick beyond fibro-sick. It wasn't until I went to the emergency room the next morning after passing blood for hours.
You may be wondering why on earth I would share this with the world. It's because our health is such a precious thing and we can easily take it for granted — even when chronically ill. Our baseline is different. We feel unwell to the point it is expected and normal and difficult to discern when something else is wrong. Add other chronic conditions into the mix and, well, good luck knowing up from down.
I'm telling this story because we're in a pandemic. I want to highlight how easy it is to ignore signals when you get so many. I'm writing this to help dispel stereotypes that chronically ill people have low pain tolerance or are complainers or are always drawing attention to tiny things. Chronically ill persons are some of the most resilient I know. Sometimes, this isn't in our best interest. Sometimes, we don't want to tell others how we feel because we know all this chronically ill stuff is a downer. Sometimes, we say a lot less than we should. It is all too easy to let stigma and stubbornness stop us from advocating about and acting on our health needs. In full honesty, I knew in my gut I shouldn't do 5km that day but I chalked it up to fibro and thus dismissed it as what, nothing? Something to always push through to prove I'm able while chronically ill. Healthy. I could do it the other day so why not again? Today I had to ask myself the difference between complaining and advocating and I had to admit that on that trail, advocating would have looked like turning around without shame. Complaining looked like bringing up my symptoms with embarrassment and then ignoring what they were saying. Self-stigma is an issue. Social stigma is an issue. Talking about it helps take its power away. We are bigger than that which we experience. Please don't ignore the signals your body sends. #selfcarejourney #fibromyalgia #honest #health #chronic #illness