I have a love/hate relationship with the fibromyalgia groups on social media. Sometimes I’m comforted by the knowledge that people understand how fibromyalgia feels, and sometimes I’m frustrated by the amount of negativity and rudeness towards those who are sharing their stories in order to help others.
Fibromyalgia is a horrible condition – no question about it. Those who suffer with it didn’t choose to develop this crap condition, but we do get to choose our attitudes and I generally choose positivity because it’s healthier.
Don’t get me wrong. I understand the need to vent on social media. It helps to know that people understand what we’re going through. It also helps to have somebody offer a virtual hug on our bad days, but if all we’re doing is being negative – and feeding off the attention which our negativity attracts – then we could be doing ourselves more harm than good because it can become an addiction like any other, and all it needs are a few words..
Life sucks. I’m fed up with everything. No one cares.
Que the sympathetic comments and crying emojis…
My perception is this..
Life sucks – Yes it does, and shit happens to everybody.
I’m fed up with everything – Only ‘we’ can change this.
No one cares – They do, but sometimes people don’t know how to be around people who are unwell – especially when it’s an invisible illness like fibromyalgia.
Logging onto loads of sympathetic comments comforts us for a short while, but it doesn’t change our situation.
I’m continually seeing members shutting down anybody who tries to be positive. If somebody posts a positive quote, they will ruin it with their negativity, and a thread which started in positivity ends up being deleted.
Example: A lady recently posted that she’s been ‘blocked or kicked off’ several fibro groups because of her ‘weight loss success story’.
Blocking somebody because they shared a success story?
Am I the only person who is flummoxed by this attitude?
I believe her because I’ve seen it. Mention the words ‘weight loss’ and ‘exercise’ in a positive way and the lynch mob are out in full force – before you know it, you’ve a metaphorical pitchfork up your arse!
I understand the reluctance regarding the suggestion of exercising to help with fibromyalgia because I had to stifle the urge to right-hook the first doctor who suggested it to me, but I can verify that exercise can reduce pain. Almost five months on – I’m still exercising as much as I can!
It’s not a cure. I still have fibro. I haven’t been able to exercise for four days because I’m having a flare up where all my joints are painful, I’m having migraines, and I’m fatigued. Coincidentally (or not) my anxiety has crept up and I’ve been having nocturnal panic attacks again. See, this is the connection between stress and fibro.
The other annoying aspect of fibro-group life is that people think that every single thing that goes wrong with their bodies is down to fibro..
*graphic image of a yellow toenail*
“Is this fibro?”
No. It’s a fungal infection.
*graphic zoomed in shot of a zit*
“Woke up with this spot on my face. Is it fibro? “
It’s a zit mate.
‘The binmen didn’t empty my bin this week. Is it fibro?’
Ok, I’m being ridiculous now, but you get my drift?
Then there are occasions where people will post alarming pictures of something going horribly wrong with their bodies..
*graphic picture of a swollen foot*
Woke up with a swollen foot. Any ideas what this is?
I don’t know cocker, but ya foot’s five sizes bigger than the other one, and it’s purple. Just my thoughts, but maybe you’d be better off phoning your GP (or an ambulance) rather than relying on fibro ‘warriors’ triage?
The most alarming one is when people post about chest pain asking what we think it is. You don’t piss about with chest pain that’s new to you. Yes, there is a condition that is common with fibromyalgia (costochondritis) but this needs to be diagnosed by a doctor. People should not be wasting time on social media asking people what they think it is! You could be having a heart attack and people are giving it the, “Yeah, I get that all the time hun – Costochondritis. Take some Ibuprofen. Be fine x.”
Thankfully, the majority of people will urge the group member to seek urgent medical help! (the one with the chest pain, obvs)
To be fair, I’ve had health anxiety in the past, and it’s likely that a lot of people in the fibro groups have it – which is why they’re constantly melting down over trivial stuff. I get it. I’ve been there, and it’s not funny at the time. But I can see the humour in it now as I look back – like the amount of times doctors have probed my arse because I was, like, totally convinced I had bowel cancer. My poor bum-hole has had more fingers up it than Sooty and all they ever found were some piles and an otherwise fabulous looking colon! I got my knickers in a right old twist for sure, but it was a valuable lesson to learn that anxiety can take us to some dark places if we allow it to.
Speaking of humour..
There are those who frown on humorous fibromyalgia posts declaring them ‘disrespectful’ to fibro sufferers?
Laughter has been scientifically proved to be good for us, so up yours, cockers!
Humour can be found in most situations. Granted, there are some things which can never, ever be funny, but fibromyalgia isn’t one of them. Using humour lightens up the situation. Most importantly, it takes away fear which in turns reduces stress, and stress makes pain worse.
It’s ok to have bad days where we just say, ‘You know what? Positivity can do one today. I need to wallow in my pit and binge-watch Midsomer Murders.’ I think it’s healthier to let some crap out now and then. All I ask is that people think before they post that negative comment because the person behind the success story has had to work their arse off to get there, and why the hell shouldn’t they be proud of themselves? Sure, I can understand how a success story can amplify our own misery if we are in a bad place and hope seems so far away, but for other people it will mean hope and could be the catalyst which changes their lives!
Let Autistic Soul tell you a little story…
Anybody who has really read this blog will know that I had a mental breakdown, and I do mean a breakdown.
My brain didn’t work.
My body didn’t work.
I was overrun with stress hormones.
I thought I would never get better!!
I read EVERYTHING I could on anxiety.
I watched videos.
I listened to podcasts.
I dusted off my Claire Weekes books.
I joined online anxiety groups.
As is the way of most autistics, I had to understand what was happening to me!
Do you know what gave me the most comfort at 3am in the morning?
It wasn’t ‘Bob from Birmingham’ who was up at the same time as me and totally going off on one about the unfairness of his lot..
I empathised with Bob, but it was the success stories which kept me from throwing myself over the nearest cliff because in those stories came hope.
Here were people who had been every bit as ill as me, or worse, and they’d recovered, and were sharing how they did it. They didn’t just sit back and give up. They tried everything until something worked. They kept falling down, and they kept getting back up again. This is what kept me going along. We will find comfort in negativity that matches our own, for sure, but that won’t make us better. That just keeps us where we are.
As an experiment to myself, yesterday I made about a dozen positive comments re things to try to alleviate anxiety (abdominal breathing) and how exercise has improved my fibro pain, and not a single comment was responded to.
We’re talking serious tumbleweed!
Could it be that some people have been ill for so long that there is comfort in familiarity?
Could it be that some people can’t see themselves ever improving?
Could it be ignorance about how the body works and not being able to separate what is fibro pain and what is down to lack of activity?
I am genuinely asking these questions because I don’t know why positivity seems to piss so many fibro-sufferers off! All I want is for everybody to be in less pain, but the bottom line is that this requires effort and the knowledge that things will worsen before they start to improve. Few things in life which are worth having come without putting some graft in, no?
If you are a fibro-sufferer, I empathise. I’m your comrade in arms, but I do NOT apologise for wanting a better life for us.
I can give you a few tips..
*WARNING CONTAINS POSITIVITY*
- Be mindful of the type of fibromyalgia groups you join and leave any which block or censor positivity.
- Understand that your body is a machine and all machines will eventually stop working when they sit around gathering dust!
- It’s more than ok to vent and to allow ourselves to feel shit at times. We’re human.
- Research fibromyalgia. Research the effects of exercise on pain. Research the effects of stress on fibromyalgia, and trawling through numerous negative social media posts will ramp your stress levels up which in turn will worsen your pain.
- Don’t be disheartened when what works for someone else doesn’t work for you. Fibro is a complex condition. Keep trying. You will get there.
- Though fibromyalgia can be very unfunny at times, try to see the funny side when you can. Use humour as a tool in your armoury because laughter releases the good hormones which bring down the pain levels and inflammation.
Speaking of humour (again) I’ll end this post with ‘Derek’s’ Amazon review which I will link to. This is doing the rounds on social media, and rightly so because it’s hilarious!
Read it and let those little drops of wee dampen your underwear!
You’re welcome. 😉