May is Fibromyalgia Awareness Month (with May 12th being awareness day). Today I thought I’d cover some of the frustrations with fibro. Okay, so the frustrations are potentially limitless, but I thought I’d pick just 5 to explore. Let’s not be greedy now! Perhaps you experience these too, or maybe they will help give an insight into life with this condition.
1. It’s unpredictable.
Plans are made to be broken with fibromyalgia. It’s a different experience for everyone, but you may have some tolerable days, maybe even some good days. You may have unpredictable flares that last anywhere between an hour to several weeks. You may have more unbearable days than you can count. I can’t tell you how I’ll feel in a few hours, let alone tomorrow or whether I’ll be able to follow through on plans for the next week. This can have a knock-on effect to mental health, relationships, friendships, social life (what social life?) and family. Just like with stoma problems and migraines, symptoms of fibromyalgia can be hugely unpredictable; it’s highly impractical, not to mention monumentally frustrating.
2. There’s no cure.
Okay, so maybe we’ve already given up hope for a magic bullet of a cure, but it’s disheartening to think this situation is ongoing. It’s frustrating not finding things that can help symptoms, or prevent flares. There’s no cure, and there’s very little help for managing things day to day. It’s hard to accept that when you just want to feel better and reclaim some semblance of the life you used to have, only to find there’s no way to ‘fix’ the problems, only manage the symptoms. I get frustrated feeling like I’m missing something, frustrated when doctors and specialists say it’s ‘all part and parcel of fibromyalgia’ and therefore nothing can be done. We have to advocate for ourselves and keep pushing if we think there’s more to the story, whether that’s another medication we want to try, or other diagnoses/deficiencies alongside fibromyalgia that haven’t been adequately investigated.
3. The relentless chronic pain & exhaustion.
Exhaustion is overwhelming. It’s bone deep. Those with fibromyalgia and/or ME/CFS will likely know this all too well, that it’s just not being ‘tired’ or worn out. It’s shattered beyond belief. Brain fog and problems with concentration are part of this and are hugely frustrating; I find the inability to think clearly, make decisions, write, focus in general to be some of the most annoying issues, perhaps because I’ve always been more brain-oriented with writing/reading, rather than sports-oriented or hands-on with my interests. In addition to that, chronic pain can be a longtime companion, forever irritating in its relentlessness, bringing you to tears at times, making you question your ability to keep going.
4. ‘But you don’t look sick’.
It’s an invisible illness. For the most part, we probably look fine. On the outside we’ll put on a smile and try to keep going, showing the world what we want them to see. On the inside, we may be crumbling. It’s hard to be believed sometimes, by those around us or medical professionals. We can also worry too much about what we think others think. I find it incredibly difficult to use a public disabled toilet for this reason; I look fine and others must think I’m just jumping the queue of the normal toilets, rather than that I need this one because I have a stoma. I’ll be the first to give up my seat to someone else on the bus, and that’s expected as I look ‘fine’, and I won’t ask anyone else for a seat when it’s busy even if I’m in agony and about ready to fall over. It can be a very isolating experience.
5. I feel guilty.
I feel guilty for so many parts of this experience. For not doing enough, for not achieving anything with my life. I feel guilty for losing my job due to stoma surgeries and that fibromyalgia changed the playing field once again to keep me out of work. I feel guilty not knowing where to go from here with money/jobs/career. I feel guilty for days when I just get by. I feel guilty for feeling frustrated or miserable about it when I know others have things much worse. I feel guilty for times when I smile.
Do you have experience with these frustrations? What would you add to the list?