AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

@rainbowdashsneeze

You're made out to be an addict because opiates are the only thing that touch your pain.

Yep.

Even when you can evidence you’ve had the pain for fifteen years, had multiple surgeries, tried every single drug going (painkiller and otherwise), tried many physical treatments, worked up a pain ladder with a pain consultant over a period of years... still they assume you’re an addict if opiates are the treatment with the greatest efficacy and least side effects. Even though you’ve been told by an actual pain specialist consultant that they’re necessary.

It’s not even that nothing else touches the pain, a few other things do (ketamine, synthetic cannabis, fentanyl) but the side effects from those make life not worth living.

Yes I would also welcome a chronic pain/conditions board @mnhq. As others have said, there are a lot of niche threads on here that get basically 0 traffic. Don’t understand the delay in getting this sorted tbh.

I remember the other threads requesting this, it's actually been going on for many many years. I remember one around difficulties living with EDS around five or six years ago where people asked for a board.

I'll be honest I'll believe it when I see it if one appears. A board is definitely needed though. If threads appear elsewhere like AIBU or whatever they can always be moved.

I guess all we can do at the moment is keep posting, when this thread is full we'll start another and another. And keep reporting the threads to MNHQ.

@MNHQ what would persuade you? What is it you are waiting for?

I have a suspicion that MNHQ have somewhere picked up the line that "focussing on pain makes it worse," and therefore see such a board as bad for us.

But not focussing on pain doesn't make it go away.

Having a place where we can share things that work, or just talk to people who get it, can help make things better.

In fact I'd say pain or disability take up less of my concentration when I don't have to make a full-scale case For the Defence every time I need the slightest adjustment or support.

Plus, it's incredibly mentally damaging to continually deny the pain to make other people happy.

Being among people who just get it, slightly lightens both those loads.

@OhYouBadBadKitten

I really hate that we feel we need to beg MNHQ. It actually feels like another humiliation on top of every day humiliation of asking for help, from doctors and from other people. We are asking for help - for a space where we can talk to and support each other and yet again we are being put on hold while they 'think about it.' :(

This.

Anyone else been told that calling yourself disabled is being defeatist or wallowing in it?

@MedusasBadHairDay

Anyone else been told that calling yourself disabled is being defeatist or wallowing in it?

Yep.

I have a disability. That is a literal fact.

It doesn’t define me. But it’s the truth. I once had a manager in the NHS scoff at me mentioning i was disabled and tell me I should be more considerate of people with ‘real disabilities’. I tried to educate her on what a disability actually is, explained that for example in the eyes of the law certain conditions mean you automatically are considered to have a disability from the moment of diagnosis (as opposed to the usual requirement that it’s gone on for a certain length of time), and she said I was being offensive to people with cancer as ‘how do you think they’d feel, being told they’re disabled?’

Absolute moron.

I look like a completely healthy person from the outside, it’s one of the biggest frustrations of having a chronic pain issue that is invisible. People simple disbelieve that you’re really that poorly, or don’t believe the pain can be that bad because they can’t see what’s causing it.

she said I was being offensive to people with cancer as ‘how do you think they’d feel, being told they’re disabled?’

Because "disabled" is an insult...

I’ve not encountered directly, although I’ve seen hints of people not understanding why I’m disabled.

I’ve definitely seen the attitude online though, both for chronic health problems and for autism/adhd. 🤬

Think it would be brilliant to have a board, so fed up with the "you don't look in pain" "you look fine to me" attitudes. We don't show the amount of pain we are in because most of the time we aren't believed, we are told we are being dramatic etc. And yes, how I wish a couple paracetamol and some whale music would fix me!

I never know what to say regarding disability. I don't claim any benefits or have a blue badge, though several people have told me I should. I don't feel I'm bad enough to warrant that though. But nor do I have normal mobility. So I'm never quite sure what to call myself! I have had people get angry with me if I've said I have a disability as it's apparently insulting to "real disabled people" and others look horrified and try reassure me that I'm not disabled but in a "don't worry, you're not one of "them" " kind of way. 😡 I've certainly had my eyes opened to the daily struggles and prejudice that disabled people face. A lot of people pay lip service to equality legislation but no more than that.

I’m Disabled and proud! Proud of history proud of fights of some amazing people. Proud of fact we have amazing community to support each other when we face discrimination left right and centre. It’s not a dirty word!

The legal definition is “ What is classed as a disability? In the Equality Act a disability means a physical or a mental condition which has a substantial and long-term impact on your ability to do normal day to day activities. ... You are also covered by the Equality Act if you had a disability in the past.” long term meaning more than 6months usually.

But do agree if you are otherwise able bodied from the outside it is a step to call yourself Disabled.

@MrsAvocet

I never know what to say regarding disability. I don't claim any benefits or have a blue badge, though several people have told me I should. I don't feel I'm bad enough to warrant that though. But nor do I have normal mobility. So I'm never quite sure what to call myself! I have had people get angry with me if I've said I have a disability as it's apparently insulting to "real disabled people" and others look horrified and try reassure me that I'm not disabled but in a "don't worry, you're not one of "them" " kind of way. 😡 I've certainly had my eyes opened to the daily struggles and prejudice that disabled people face. A lot of people pay lip service to equality legislation but no more than that.

I'm the same as you. I could, and probably should, apply for a blue badge. But I spend so much time trying to focus on what I can do, filling out forms where I have to write what I can't do is so devastating.

It’s worth applying for a BB, without claiming a mobility compound you will need an assessment by OT or similar via the council so each will decide how much and how far you can walk before you qualify. Though I’ve got BB as wheelchair users but often there isn’t the BB spaces to make use of it. Then have park furthest point in carpark to get space to get out of the car.

If you don’t qualify or yet no harm done, but could give you extra help. As far as benefits go one of the least intrusive to apply for.

Having just seen some ignorant bullshit on another thread about how chronic fatigue is not a barrier to work because people just need to exercise and sleep properly I am even more convinced we really need this board, @MNHQ.

@SingToTheSky

Having just seen some ignorant bullshit on another thread about how chronic fatigue is not a barrier to work because people just need to exercise and sleep properly I am even more convinced we really need this board, *@MNHQ*.

Urgh, there was a thread the other day about how "of course everyone can walk for 10 minutes" and how people who can't are just lazy.

Oh yes all parents are tired! How many times can you not sleep because you need a wee or are hungry but you can’t get out of bed to do either because you are to tired or in pain? No didn’t think so.

I am so fed up of having to constantly fight for support with chronic pain. To the point that I've just completely had enough, of the pain, of fighting, of everything and I'm sat on the floor crying. Why is it too much to ask for support??

@MedusasBadHairDay I didn’t see that thread. But I did read a comment saying half an hour walking didn’t count as exercise - yes for many it’s less than their usual daily activity. For a fit healthy person maybe it’s not enough. But for me last year I felt so bloody proud I was managing that - it was the fittest I’d been in years and it led to me managing other exercise too.

Actually I’d love to have a thread on the board where we can share our achievements no matter how small. Managed the washing up today? Amazing. Walked to town for the first time in months? Brilliant. I would never be brave enough to post such a thread on a main board because most people wouldn’t get what it means when you manage something so small that most people take for granted.

I have reported the post on the other thread. Maybe bad form as I wasn’t even asking for it to be deleted, but it was to show an example of why we need somewhere. It’s not a deletable comment, it’s just opinion, but that’s the problem - we need somewhere away from unhelpful stuff like that.

Think that’s why when you go looking for similar threads as the one you want to post there isn’t anything.

Once had an A&E doctor ask me most profoundly “But what do you do all day??” Er I feel crap all time. When was the last time you couldn’t get out of bed when you were sick, were you bored? No because takes all your strength to do the basics (or not!)

Yep. I get so paranoid about posting because there is always the risk people don’t get it.

I don't think @mnhq actually does anything.

Maybe a thread in site stuff, referring back to this one, would do the trick?

I'd like to add to the list- exhaustion. Being in pain is exhausting. Doing things differently because of pain is exhausting. Thinking about pacing is exhausting.

I'd also like somewhere I can come and grumble about symptoms. I don't obsess because I worry I'll make it worse, but it would be nice to tell someone I feel rough. Nice to be able to comment in passing that my muscles and tendons seem to have stiffened up for no good reason, and everything is even more effort than usual.

I mean, I don't want to be a debbie downer, but I've no one else to tell. People get bored/aren't interested/don't know why you are telling them if they can't do anything.

And another thing- fear. Fear for the future, fear of it getting worse, fear of one day having one pain too many and not wanting to go on.

Fear that I won't be able to be even remotely independent, and then what will happen.

Fear of having to eat my husband's cooking if I'm not well enough to do it!!

Sorry that reads wrong. I'm sure MNHQ do loads, I meant the@ function with @MNHQ doesn't do anything!