Active discussions

Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

To suggest the next mn campaign targets views on invisible disabilities

153 replies

BeyondIsBloodOfTheDragon · 18/04/2014 20:25

That. I don't really have much more to say in my OP Grin

Yet another thread here (and I consider 'mn the collective' quite clued up in general about this) moaning about people having time off work with a long term health issue. It's far from the first and I'd guess far from the last.

Anyone have any thoughts?

OP posts:
BeyondTheVirtualActivist · 28/04/2014 08:19

Confuddled, I cant see what you mean, and im worried something i've said has upset you? :(

Good point re spoon theory, i'll find a link :)

BeyondTheVirtualActivist · 28/04/2014 08:19

Hi MoG, btw :)

Cadastre · 28/04/2014 08:21

Yes! I have an underactive thyroid and tell most people quite soon after meeting them lest they judge my weight on bad eating habits. (Am Paleo) I hate that people assume I'm overweight because I eat crap.

confuddledDOTcom · 28/04/2014 14:26

Beyond, I think you're doing something brilliant, my comment wasn't aimed at you. Someone said that they thought this was a bad idea because they didn't want attention. I'm guessing that's someone who doesn't have to explain ten times a day that they haven't "done" anything, who doesn't have to put up with comments about being too young to be on crutches, having people cut you up and complain you hit them, thank you for pressing the disabled button on an automatic door, complain you used the disabled toilet...

Sadly not all of us can fade into the background and have to deal with the ignorance every time we step out. I met up with someone I met online last week for the first time IRL, they were really thoughtful, being helpful without taking over and couldn't believe what I put up with during a day. It's not rocket science.

BYDLS and Spoon Theory are good cross overs here. Christine Miserandino might be interested.

BeyondTheVirtualActivist · 28/04/2014 15:19

Ah, thanks for the links, youre a star. I've had the hv here for the first of the probably many "please take seriously the fact that i think my children may have asd" visits, so didnt get back to post them

BeyondTheVirtualActivist · 28/04/2014 15:21

Cadastre, I've become ridiculously paranoid about my weight since i've been ill. Worried about people looking and thinking (when i finally get it) "well, maybe if she exercised she wouldnt need the wheelchair" :(

MiscellaneousAssortment · 28/04/2014 21:54

Hello and yes, can I sign in for the weight paranoia club?!

When I was losing function and mobility at a terrifying rate I lost count of the people that told me it was my fault because I was getting fat and I needed to stop whining, eat less and go on punishing runs. And the 'specialist' consultant who told me that I was deconditioned and would make a miraculous recovery of I stopped being lazy and mobilized more.

I 'mobilised' myself into a dramatic and permanent deterioration by 'obeying' these victim blaming truisms. I was a single mother working full time with an 8 month old and doing 2x classes of Pilates, 1 x class yoga, 1x 2 hr swimming, 1x aquafit, 1x hydrotherapy and 1 hr of rehab physio every single week. Anyone want to guess the end result of that? Yes indeed, I became a cripple who can't even wash her own hair.

Sorry - rant over!

Everytime I'm out in public now on my mobility scooter I can't meet anyone's eyes as I think they are seeing the girl that's so fat she can't move her hulking weight around. I think rationally people aren't seeing that - but deep down, I can't shake the thought.

Fat makes you double invisible.

fuzzpig · 28/04/2014 23:04

I am paranoid about my weight. Due to my 'main' illness being controversial anyway (ME) I really worry about people thinking it's caused by my weight. Even though I know sufferers ranging from much bigger than me to really thin, and everything in between.

confuddledDOTcom · 29/04/2014 11:04

Someone told me recently that Paralympians do it... (he is an aux at the ortho hospital that I met socially)

My rhuemie on the other hand said that yes I am overweight but I am not really able to do much about it so she won't worry. At one point last year, being postnatal, my weight was about 10kg (I work in kg it doesn't make me so depressed as I don't know what it means) over what I am used to. I then went into a IBS flare and barely ate for a month or so and my weight came down, it's still very twitchy so I can't eat a lot and I'm now almost down to my pre-children weight and planning on asking the GP for a tummy tuck (post-caesarean belly) which I think will bring me down even further. A friend the other day couldn't believe it when showed them how little fat is on my ribs and hips as I don't look like it and the scales wouldn't suggest it. Other than the belly it's boobs and hips. I actually walk a lot which means that my arms and upper body get a lot of work out too.

Before my back got so bad I used to exercise, I was on the BabyFit forums and used the site for pregnancy exercises, I used to do about 100 crunches a day. I had my home visit from the midwife, I was staying with my parents at the time and afterwards Mum said "Oh yes, so when do you do exercising?" my OH turned around and said "every night when you've gone to bed!" I do miss being able to do it, but I struggle to sit myself up with help these days.

I'd love to see MNHQ or someone do a survey to a. list conditions and b. list things that have been said/ done to us. I think the results could be quite shocking to people who haven't been there. Maybe we could set one up ourselves to encourage them to do something?

BeyondTheVirtualActivist · 29/04/2014 11:11

Survey is a fab idea! Could start with "do you have an invisible condition" to show how common it is, and from there "is your condition disabling" to show how common that is? :)

BeyondTheVirtualActivist · 29/04/2014 11:13

I've been thinking this morning that i really need to write a blog post about this, dont have a million followers but am a mn blogger, so maybe they could share it? Have an essay due and then i'll work on something

Elfhame · 29/04/2014 11:22

I have mental health problems and am overweight due to the medication.

confuddledDOTcom · 29/04/2014 11:51

If it could split people off from the first question to pick up on attitudes to disability - should BB holders use P&T spaces, what is the criteria to use accessible toilets and what do you think the should be...

I'd also like to list the conditions that people have so that we can show what you don't know people have and if they use aids too, maybe if you use aids do you sometimes go without.

Oh aids reminds me of one of my biggest gripes, I'm weight bearing so I can walk without and at home I do walk without but if I'm walking further than inside the house type walking I need them. Sometimes when I'm out I might need to answer the phone, put gloves on/ off, do my coat up etc and often I will keep walking and just stop using the crutches for a few seconds whilst I do it. The amount of people who snigger at me or make comments about being a benefit cheat (I was bullied in the street quite badly by the local gang a few years ago over it, I've had times I've had to have an escort to get into my own home) like I've been caught out. I once went to Tesco and there was an empty trolley dumped in the entrance so I went to push it in by walking against it, was going to put the sticks in it when I was out the way, but the wheel lock had triggered and it didn't move. A woman nearby literally doubled over laughing, tears rolling down her eyes and said to her friend it was the funniest thing she'd ever seen. I'm not sure what was funny, I have an evil sense of humour I know but even I couldn't find the humour in that.

BeyondTheVirtualActivist · 29/04/2014 12:18

Like this?

"You see someone using a disabled toilet. Do you:
A) shout at them, tut or give them a look
B) think they probably shouldnt do that, but say nothing
C) assume they have a reason"

Similar for someone using p&t sans child (possibly also sans blue badge)
Child doing something inappropriate in a supermarket
Colleague off work long term with mh problem
Person on mobility scooter but walking in shops

Questions possibly need to be deliberately provocative to make sure people answer honestly?

madhairday · 29/04/2014 13:29

Great ideas re survey and blog post :)

confuddledDOTcom · 29/04/2014 13:30

Problem with questions like that people may not realise they would do it or admit it. So by asking policy questions you might get a better response.

confuddledDOTcom · 29/04/2014 13:31

I'm not sure about all of them though as some are more opinions than something you can say what policy you would use.

BeyondTheVirtualActivist · 29/04/2014 13:54

Yy, i see what you mean - i was thinking it'd show how common it was to be annoyed at someone without thinking of the circumstances, but i agree people would lie to show themselves in the best light.

BeyondTheLimitsOfAcceptability · 05/05/2014 13:22

Havent bumped this for a few days :)

MiscellaneousAssortment · 10/05/2014 16:14

Bumpity bump.

The trouble is with any campaign involving disability, is that the people involved usually have their hands full living with a disability.

I hope mumsnet don't think people aren't behind this campaign because we've stopped posting - I suspect it's because everyone is super busy just getting through each day.

madhairday · 10/05/2014 16:59

So true misc. I've not been on this thread lately as been in hospital for 10 days. Good to see it active still. Is there any progress with MNHQ on it?

confuddledDOTcom · 11/05/2014 17:49

I've been quiet because I've tidied the house this week. That's been a monumental effort, not because of how bad it is but because I can only do a few minutes at a time. I had to call Dad over yesterday so I could mop and vac the stairs as I can't do lifting.

BeyondTheLimitsOfAcceptability · 12/05/2014 09:43

My little sisters hen night has had me pretty much out of action for a few days. Grin
Less than four weeks and my baby sister will be married Shock

MNHQ
RowanMumsnet · 13/05/2014 11:55

Hello

So sorry we've kept you waiting for a response: we're just having a think about this now and we'll be back with something more useful ASAP.

MNHQ
RowanMumsnet · 20/05/2014 11:39

Hello again

As some of you will know, there is a bit of an emphasis on invisible disability (albeit among children) in our This Is My Child campaign. (While we're on that, we've just started a thread here with an update on our current plans for that campaign.)

We've also got a thread running here asking for all MNers' views about what policy areas are particularly exercising you at the moment, so it might be worth adding this issue to that thread as well.

All that said, we hear you when you say you'd like something specifically to do with how invisible disabilities affect adults. We're slightly under the cosh at the moment between This Is My Child, the Miscarriage Care campaign and the Bounty Mutiny, and we're wary of taking on too much - but we will have a brainstorm about how we might be able to do something effective on this particular issue.

Thanks
MNHQ