Chronic pain and fatigue are hard enough – but for many people living with ‘invisible’ illness there’s also the distress of people not recognising, or even believing, that your experiences are real.
This is certainly something lots of people living with fibromyalgia can relate to. “We frequently hear of doctors saying they do not believe in fibromyalgia to a patient,” says Des Quinn, chair of Fibromyalgia Action UK.
Bottom line? As Quinn says, “more research is needed”.
There’s still a significant lack of understanding around fibromyalgia – which is associated with a range of symptoms, including widespread pain, headaches, fatigue, muscle stiffness, sleep and cognitive problems like brain fog and impaired concentration – in terms of its causes, diagnostics and how to best manage it.
But alongside that, taking time to listen to the experiences of those living with fibromyalgia (which affects up to one in 20 people, according to Bupa) can go a long way.
To mark May’s Fibromyalgia Awareness Month, we asked people living with fibromyalgia to share some of the things they really want people to know…
1. Looking ‘well’ does not mean we’re fine
“I mask pain frequently…. The pain can range from stabbing (making you freeze and taking your breath away), through to constant throbbing, aching and cramping.”
2. Unhelpful reactions from medical professionals can take a massive toll
“I spent 20 years knowing there was something wrong with me but being fobbed off by countless doctors and specialists, being told it was all in my head. It was soul-destroying.”
“People with fibromyalgia often feel dismissed… It’s so invalidating and it makes you stop seeking help.”
3. Having to constantly explain, or not being believed, can be really exhausting
“The main thing I find myself fighting for is simply getting people (family, friends, colleagues, medical professionals, etc) to believe me when I explain how I’m feeling. I often get, ‘You don’t look sick’, or, ‘It can’t be that bad’, when the truth is, I use the majority of my energy pretending to be OK.”
4. Some people with fibromyalgia still work, some are unable to – both are valid
“I try so hard to stay in work, to be able to provide for my family and try to keep mentally sane, and I’m often quizzed, called a liar, not believed and not taken seriously.”
5. There’s a lot you don’t see
“I haven’t had a relaxing bubble bath in four years because I can’t get in or out. I have to have a shower, with a seat, because I can’t stand up in the shower for long. My step-daughters blow-dry and brush my hair for me because after a shower, I struggle to lift my arms.”
6. It can affect you differently at different times
“Every day is different and things I could do yesterday, I cannot do today, but hope I can do tomorrow.”
“I can be ok one minute – and then boom, I can’t even walk, as my feet and lower legs are in so much pain.”
8. The fatigue can be overwhelming
“Chronic fatigue is not the same as just being tired. It can literally stop you from doing anything.”
“The fatigue is like you’ve been at a festival all weekend and have an awful hangover, but you haven’t actually done anything.”
9. We don’t always know when we’ll need to cancel plans
“[My] energy levels are different every day and change quickly, so it’s hard to plan and it’s not being fickle if we have to drop out of planned engagements. We still want to be asked to join in and not dropped from friendship circles… an offer of coming round for a cup of tea or watching a film on the sofa means the absolute world.”
“It also affects my kids and family. Making plans to do something and then having to cancel them because I have a flare-up, it’s not fair to them.”
10. There’s no ‘one size fits all’ way to manage it – and everyone’s experience is valid
“I manage my fibro day-to-day. I lead an active and healthy lifestyle – [using] a multi-disciplinary approach that allows me to live better with fibro, and coping strategies/pacing to help get me through the day-to-day.”
11. Please don’t imply we’re not ‘trying’ hard enough, if what worked for one person doesn’t work for the next
“Please don’t try and tell us to ‘just do X/Y/Z’, it’s patronising and hurtful. We want to be well. Judgements and conclusions that we don’t want to help ourselves are not true, and so unfair.”