Negativity - I personally find this really hard, I know we always cannot be positive a million % of the time but being negative is so tiring, and drags us down physically, mentally and emotionally. And us who have fibromyalgia we know this causes us to flare. So ultimately our negatives causes US to suffer.
life is hard, it’s tough, complex and stressful at times. However there are positives, despite having fibromyalgia. We don’t have to endure such harsh treatment like chemotherapy, immunity damaging medications like cancer patients do. I don’t dismiss our suffering and our lack of answers from specialists to our fibromyalgia questions BUT it’s not terminal, and we do have good days.
Positive mental attitude will always win
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Choco-holic37
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Hi there, I agree no one can be positive 24/7 not sure I would want to be . I think everyone would be giving me a very wide . That goes for been overly negative too.
I have had fibro for 40+ years and today woke to find myself stuck in bed for obvious reasons. But you know what I bet I'm not in it tmw.
I have had people say you never talk about your illness. Not sure hubby would agree with that LOL
But I do believe constant negativity will always bring a person down. Not to mention those around them.
And I agree I would take my pain and suffering over many other horrible illnesses. I think you were correct when you said fibro should be put in perspective with other life threatening illnesses.
Comparing against other conditions or situations can be "othering" and counter productive. You will be more likely to draw someone into your conversation that has a personal story or objection due to their own experience.
As to PMA I wonder at those that rail against it as it seems to be the alternatives are some sort of stoicism or being negative all the time It is complicated but there is some research that suggests some with fibro have a psychological fragility and others may be prone to catastrophisation. Certainly in my experience with the community I can identify some of these people but not sure how prevalent it is within our community.
A very important consideration when considering things that apply to our community is that this forum and all support forums for fibro are:
- self selecting
- only from people who access this service
- do not represent people who do not need support or are looking for support groups
This means that pronouncements about the whole population of those with fibro especially from a single perspective are not going to be correct. I always try to qualify my comments on the community when make wider points for this reason.
I am fortunate to have a much wider reach than most people in our community. I have spoken to thousands of people with fibro vias communities like this (~18 years), our helpline, in person and through research and other channels. I also speak to other advocates, researchers, charity representatives, health professionals, and many other people.
AS I said above it is really complicated to have general advice that will fit all, or most people. People need to be in the right place to take on some advice as well.
Yes I agree about been in the right place Des. But continued negativity and tunnel vision will not help the majority of fibro suffers or even the person that's filled with over powering anger and negativity.
Sure we all have our down and mega horrendous flares. Most live with mega pain 24/7 I'm one. And it's good to talk and get it off our chest. But to feel like that all the time would bring the most stoic listener down.
Not sure where I'm going with this LOL But I do know that this forum was one of the best distractions for fibro suffers if only for a short while.
If you were looking for fun laughter, information and politeness this was the place to come.
But times have changed and not for the better IMO so we have to change too I guess or move on. NOPE I'm not leaving you don't get rid of me that easy 🤣😂😂
As I have probably said before the forum is its people and there is room for all types. The structure on here (or lack of it) means that we cannot easily have a comedy corner or a craft space.
Having experience of multiple communities that the charity moderates, others that I look at that we do not in the fibro community and also others outside of our community there are the similar peaks and troughs. I can remember and look bac on the flashpoints before I became significantly involved on here and the ones since. In those 10 or so years things have ebbed and flowed and people have changed also. (Not me though.... still pedantic and stubborn as always before you comment )
I think most people come on here as a distraction and when met with some members being so down beat and negative it’s draining before someone has even says anything!
We all have our moments when we want to scream, cry, shout about our fibromyalgia however I.l Imagine most people come on here to read some positivity. it’s even worse then the same people leak out negativity constantly.
Life is too short and there is always someone worse off than ourselves
This is a support group and people will reach out for support and this is a place it will be given. But we do not single people out. People are are different places in their journey and as long as they are will to talk then they can see support here. As long as they follow the groups rules of course.
As always if someone feels someone's posts are not following the rules then please report it to the admin team and move on.
I do appreciate people are on their own journeys with their fibromyalgia. and maybe us who’ve had it for donkeys years as just more adjusted mentally and our approach. Who knows I guess peoples history, background and current situations.
I just like some positivity, there’s so much rubbish going on in the world and in our own lives, we just become desperate for some rest bite from it all.
That's a fine attitude but lets not dig up people for not being positive enough when they are going through their own personal hell as that would make this a very poor support group.
As mentioned elsewhere support groups are people needing support reach out for it so on the whole they tend to be more negative than positive. You will see this in other forums as well.
I do agree continued negativity can be difficult to deal with but also still valid if that's how you're feeling. If you're able to offer some kind of support or empathy that's great but it's also absolutely fine to bypass if you just don't have the bandwidth to offer anything.
Personally I think that's why this forum works so well. There will always be someone that will be feeling exactly the same way and plenty more who will have that bandwidth and even though it's only words from someone you don't know, words can be pretty powerful.
So, while I'm here Lol (vent) I've 'forgotten' to pace & basically been in bed most of yesterday & today!🙄 Don't think I'm ever gonna get it right. 😂
Wise words yeah I agree. I would like to think I can offer words of support encouragement and wisdom in the times of need but sometimes I just find it hard when it’s just a barrage of negativity. Perhaps I need to learn how to deal with that myself? Perhaps.
🤔
Sorry u have been unwell lately, hope you feel better real soon.
A lot of people come on her because they have no one else to talk to about their condition. Some people have family members that don't believe they're suffering, or they're being gas lit. There has to be a space you can come too where being sad is forgiven and you can still be seen to be a valid human being. It's hard to make friends when your suicidal or in pain, at least here, of all places this should be understood, should it not?
I hear you... But...This may sound down beat but it needs to be remembered that just because our drs dismiss us, tell us to learn to deal etc, Fibro lives can be shortened by the condition. Not quite sure why. Likely many reasons Stress is one. The various long term drugs is another. Also I suspect fibros eventually stop taking note of new symptoms. They forget sometimes, hopefully rarely symptoms can mean something serious and should be checked! Also of course, 'Trigger Warning', some dear struggling fibros do give in to despair and do it successfully. Probably due to having been prescribed dangerous strong meds!
I remember at my lowest points, I felt bad about feeling so miserable. I didn't want to be around people because I could no longer fake being normal, upbeat. I was beat! What you say about negative folks is too true and I'm sure, many of us are all to aware of it. At the same time, at these points, we really do need to be around people and feel some acceptance and connection.
When people are down here, try not to judge it bad. If it's not for you, move on. There is bound to be other conversations more uplifting. We each need to take responsibility for what we need to maintain our mental health.
When I see folks struggling, I think about the times when I've been there and I've been hopeless. How do we deal with what seems endless?
I try to offer something if I think I can. Maybe it's nothing to the person who's feeling rubbish? More stuff that won't work? But maybe knowing someone has been there might give hope to try other ways? Maybe some distracting reading, whiles the time and helps a person get over the worst of how they are feeling? Feeling do pass, given time, even bad ones. Maybe someone else will see the thread and find what they need?
I hope there is room for all sorts here. It's lovely to see the daft things people post to raise a laugh. The photos shared and pastimes; Peoples passions and talents. But I really think many people come here really needing advice from people who know what Fibro is like. Sharing info is important and hopefully that is the positive side of the venting? Some will provide the gentle hugs and others will share their strategies. Something for everyone.
Yes I agree, an excellent reply. When I’m struggling I take comfort and get support from the posts about the common struggles that we face. When I’m more ok I like to reply to posts with support and advice where I can. It works for me.
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It is complicated but there is some research that suggests some with fibro have a psychological fragility and others may be prone to catastrophisation. Certainly in my experience with the community I can identify some of these people but not sure how prevalent it is within our community. 
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