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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

AIBU in thinking that Mumsnet needs a Chronic Pain Board

495 replies

Ouchwtfthistime · 26/02/2021 18:04

Because we need to talk about:

  1. Denial
OP posts:
Thread gallery
5
doadeer · 04/03/2021 19:44

@Ouchwtfthistime 👏👏👏yessss so much this. And great point about low moderation - we are too tired to kick off 🤣

There are so many aspects :

  • advice about medication experiences, - treatments and procedures
  • not being listened to
  • mental wellbeing how do you stay sane
  • exercising and weight management with chronic pain
  • relationships and sex with chronic pain.

I could list so so many @mnhq - no way you can have one thread!

Akire · 04/03/2021 19:47

You have it spot on Ouch. Do we even try or give up and go back to everyone pretending stuff we deal with day in year out doesn’t really happen?

colouringindoors · 04/03/2021 19:52

That's a sh*t response. My chronic pain has nothing to do with autoimune stuff. And there's loads and loads of different problems things and loads of people who've expressed interest. One thread would be totally useless. I'm really pissed off about this. AngryAngryAngry

SingToTheSky · 04/03/2021 19:52

Excellently put ouch

Original poster
Ouchwtfthistime · 04/03/2021 20:02

[quote doadeer]@Ouchwtfthistime 👏👏👏yessss so much this. And great point about low moderation - we are too tired to kick off 🤣

There are so many aspects :

  • advice about medication experiences, - treatments and procedures
  • not being listened to
  • mental wellbeing how do you stay sane
  • exercising and weight management with chronic pain
  • relationships and sex with chronic pain.

I could list so so many @mnhq - no way you can have one thread! [/quote]
What is this sex thing you speak of doadeer?

I think I need to add libido to the list...

OP posts:
doadeer · 04/03/2021 20:55

Hahahaha

Correction : *lack of sex

MrsAvocet · 04/03/2021 21:02

not being listened to
Very pertinent doadeer ! To which we could probably add being patronised and treated as "lesser". I mean, it's not like we have real illnesses is it? 😡

Furries · 04/03/2021 22:24

What a shit response - and not even posted that response to this thread so that we could all see it.

Seriously pissed off on behalf of everyone. Going to calm myself before I post something out of order!

MedusasBadHairDay · 04/03/2021 23:36

@Furries

What a shit response - and not even posted that response to this thread so that we could all see it.

Seriously pissed off on behalf of everyone. Going to calm myself before I post something out of order!

Yeah, not telling us directly is.. not great.
IsItSpring21Yet · 05/03/2021 01:53

It's a bit shit they couldn't even post they won't make a board on here where everyone could see. It feels just like another version of "sorry but not sorry, can't you just do .....: instead?"

Disappointed.

Loushome · 05/03/2021 08:33

@IsItSpring21Yet

@MNHQ

Almost in the same way our pain is invisible, our fights are invisible so online we must be hidden too I guess......

Sooverthemill · 05/03/2021 08:44

@Ouchwtfthistime

Dear Mumsnet,

We're bloody knackered of trying to be heard so I'm asking for a reasonable adjustment. Yes, I know, you're not my employer, but please hear me out? Chronic pain comes hand in hand with fatigue, trailing through a support thread requires concentration and relies on memory - we've already told you that we're not so good at that. And whilst we all have similarities with regards to our conditions, we've all got different stuff going on and it gets lost when it's all on one thread, because we're knackered with shot memories. So we'd really appreciate a small little place, to call our own, where we don't have to work so hard to be able to participate on Mumsnet with people who understand the achievement that is putting the washing out although I'd be lying if I said I'd managed that

So what do you think? A reasonable adjustment which takes into account our difficulties and in return we guarantee more traffic and threads that won't need much modding.

Please?

God you can tell I'm desperate can't you.

Perfect. Absolutely spot on. It shows that @MNHQ doesn't understand that chronic pain is all consuming, exhausting, requires full on concentration ( which means you can't always concentrate on anything else) , fills your entire brain and body. And an achievement for my DD would be cleaning her teeth herself.
Furries · 05/03/2021 09:18

However, it’s lovely to see that there’s a section about bloody stationery - I mean, where would be in life without fucking stationary. The requests for that one must have been really heartfelt for it to end up being created. 🤬

Furries · 05/03/2021 09:19

I really need to check for missing words and spelling before hitting “post”.

Akire · 05/03/2021 09:23

There is also a topic just for
Bloody fish and at the bottom of the first page the post is dated august 2019!! Obviously well used board then

DunravenBadger · 05/03/2021 09:23

"Hi DunravenBadger, and thanks for your thoughts, we're sorry you're disappointed.
We thought that this might be the first step - to get an idea if a new area would be popular and that you could work with us on this.
We're not keen to set up new sections without clear evidence that they'd be well-used.
We're keen to move forward with this, but please let us know if you're not interested in running a support thread and we'll try a different approach.
Best,
Michael.
MNHQ"

What so several hundred comments on TWO threads isn't enough and isn't working with them? AngryHmm

MedusasBadHairDay · 05/03/2021 09:25

I don't think it's fair that they are putting all this on you either. Why don't they come on one of the threads and talk to all of us?

Akire · 05/03/2021 09:29

What does everyone want to do? Set up general chat thread with
Chronic pain/conditions relationships
Chronic pain /conditions /diet lifestyle
Chronic pain/conditions Coffee shop chat etc

Or find a different platform that may work better? Not that I know what that could be.

DunravenBadger · 05/03/2021 09:30

@MedusasBadHairDay

I don't think it's fair that they are putting all this on you either. Why don't they come on one of the threads and talk to all of us?
Exactly! I've reported the thread again and said exactly that! Doubt I'll get anywhere but still...
MedusasBadHairDay · 05/03/2021 09:38

@Akire

What does everyone want to do? Set up general chat thread with Chronic pain/conditions relationships Chronic pain /conditions /diet lifestyle Chronic pain/conditions Coffee shop chat etc

Or find a different platform that may work better? Not that I know what that could be.

I'm wondering if we do what someone suggested previously of starting separate threads (as if we had a chronic pain board) but preface the titles eg. "Chronic Pain - Can anyone give advice?"
DunravenBadger · 05/03/2021 09:40

@Akire

What does everyone want to do? Set up general chat thread with Chronic pain/conditions relationships Chronic pain /conditions /diet lifestyle Chronic pain/conditions Coffee shop chat etc

Or find a different platform that may work better? Not that I know what that could be.

Apologies, cross posted. Personally my thoughts are I'd rather find an alternative platform if this is how they're going to treat us. Apart from Discord (which, I'll freely admit I don't actually know how to set up a group on there), I'm not sure where would work and still enable some level of anonymity for those who wanted it.
Furries · 05/03/2021 10:24

@MedusasBadHairDay - it’s an idea, but posts are still going to get “lost” within a myriad of other threads. Rather than having a clear section to go to where people can then find threads all in the right place.

And it’s not fair for @DunravenBadger or others to be dumped with trying to push this forward/find solutions etc. Why can’t MNHQ put their replies/suggestions on this post so that those interested can see them/respond to them etc?

How difficult is it to set up a new board under the Health section for Pete’s sake? I’m no IT whizz, but I can’t see why it’s such an onerous task.

I’m not keen on finding another platform, but that’s just my personal view. I don’t do any other SM etc, it takes enough effort popping on here, can’t be doing with finding anonymity somewhere else as well.

I’d still really like to know how a request for a stationery thread was approved! Did it take multiple campaigning requests? Is there some magic flowchart for decisions? Were the requests submitted by post on crisp, thick, premium paper and beautifully handwritten in sparkly gel pens?

MNHQ should do a quick sweep of all topics that have less than 5 pages of threads and also see when they were last posted on. I’d bet my bottom dollar that this requested section would generate a lot more traffic.

picklemewalnuts · 05/03/2021 11:59

I suspect new sections were set up when asked for, and then many were underused. Instead of biting the bullet and regularly removing unused areas, they are trying not to add new ones. It does make sense, I just think they are wrong.

I'd join a group of threads called 'Chronic Pain- what helps me', ' Chronic Pain- grumble here', 'Chronic Pain- GP isn't listening' etc. Ideally with a master list.

picklemewalnuts · 05/03/2021 12:36

I suspect new sections were set up when asked for, and then many were underused. Instead of biting the bullet and regularly removing unused areas, they are trying not to add new ones. It does make sense, I just think they are wrong.

I'd join a group of threads called 'Chronic Pain- what helps me', ' Chronic Pain- grumble here', 'Chronic Pain- GP isn't listening' etc. Ideally with a master list.

Akire · 05/03/2021 13:15

I do like chronic pain name
Over chronic conditions as covers those people who have pain but not a specific condition or answers are more likely to join in.