I had a required physical (ironic, but required to get my meds, even though I was just there two months ago for a regular visit). Anyway, the prodding and such caused a nice little flare, and as I sat reading emails one came in from a Fibro newsletter I get. They decided to do a post of Spoonies sharing pictures during symptom flares or how they cope with the visible symptoms. Yet somehow some people still don’t believe it’s a real condition and that there’s a community that really needs help. This is a group that have massively high suicidal ideation and risk rates. So I thought I’d share more information about it that might help others understand it a bit better or have a resource to share if they’re a Spoonie and trying to find examples to help people see behind the mask.
The Mighty post has a lot of examples of the visible symptoms that we tend to hide. They have tons of resources on their site and their newsletters are always comforting, in a way, because sufferers know that someone believes them and that it’s okay to not wear the “I’m okay” mask that we try to keep in place all of the time. Unfortunately I don’t have the umph to get on my computer, so the link will change the page directly to their site, instead of this post, so please remember to come back for the rest. 🙂
There is also an interesting study here that was done a few years ago in two countries, and then another country later, with a control population, chronic low back pain, and Fibro sufferers, that studied the rates of ideation and risk, with Fibro being sadly very high.
So, if you have a friend or loved one who suffers, hopefully these will help you understand what they’re going through and trying to hide from the world. I hope it not only raises awareness, but also more compassion. One of the most hurtful conversations that are surely meant to be helpful is that “my friend’s sister’s cousin had that and got better by…”. Sometimes, if you’re lucky, the illness and symptoms go into remission. Other times you relapse and that might become your new normal. That seemingly uplifting comment undermines their work of having a healthy mindset for coping and increases that ideation risk, because they feel so alone and misunderstood. If you feel like reading a bit more about awareness, I have a section dedicated to that on my Pinterest Fibromyalgia board (the side bar link takes you to my profile and I keep things pretty organized, so it’ll be easy to find a lot of pins to help others understand Spoonies better).
Thank you for helping me be strong enough to remove my “I’m okay” mask sometimes and helping me raise awareness. It is truly empowering and that’s one of my key habits to develop for this year. Y’all are awesome! 😀