To suggest the next mn campaign targets views on invisible disabilities

[BeyondIsBloodOfTheDragon]

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

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?

I would definitely support this. My DH received terrible abuse for parking in disabled spaces and using disabled toilets when he was extremely ill with heart failure. All people could see was a young, pal looking (25) man. They did him cry at home after being shouted at and abused in the street.

I have a hidden condition, condition not illness or disability because I am not either.

Little bump?

Isn't it telling that most responses are from people who already have awareness, either from personal experience or because of a close relative?

Some days I have several hidden 'conditions', some days it's a 'disability', which of course makes it very much harder to understand. AND one of my conditions is highly stigmatised too which makes it doubly hard to get support (autoimmune liver disease).

Yeah, its quite sad :(

Otoh, can't complain that all you lovely people agree with it though :)

I use a white symbol cane. People think I am lying because I can see. They question why I have it, question why I have a disabled bus pass, suggest that I should get my eyes tested and question why I don't just wear glasses, because "I can't see a thing without my glasses on, I couldn't walk around like you do!"

Most days I explain and try to educate, some days (and some people) I ignore or swear at, occasionally (though very rarely these days) I cry.

Id support it too. fed up with judgy tuts and looks just because they cant see mine.

I would support it. People can't see my son has epilepsy, my family and DH's family wont even acknowledge it. They think he is greedy because his meds make him hungry and that I molly coddle my DS as I don't want him to get to hot/tired/stressed. A campaign may prevent some of the tuts we get at theme parks because he can not queue for along time after a massive seizure on a hot day in Thorpe park.

Thanks :)

How many posts before raising the suggestion to hq i wonder. Obviously a lot more than there are now, but then they are going to be better at getting attention than i am

I'd most definitely support this.

where do all these campaigns go afterwards though?

They should go straight to downing street.

Yes, yes and yes again. I would wholeheartedly support this.

I have a rare and degenerative lung disease. People generally can't tell, apart from the times I am on o2 or in a wheelchair/mobility scooter (and even then get the looks tbh) - all I get is 'but you look so well!' (Maybe we could call the campaign something similar?)

Sometimes I try and make people think about it by saying that if they could see my scarred and full of holes lungs they would understand, and it wouldn't be any different to seeing someone in a wheelchair in terms of visibility. It gets them thinking but in the end what people see is the outer person, and if that outer person looks 'normal' then it is very, very difficult for people to 'get it'. I like clothes and make up too, so it's even more the case that I'll get abuse for usign a disabled toilet because of how I look. Anything that could educate people would be a good thing.

I suspect it won't reach the ignorant man on the street though, the dm reader who believes all the crap about spongers and people 'on the sick' - but it could help those who are genuinely trying to understand but struggle to due to no personal experience. If it could only change a few minds it would be well worth it.

I think it would be good to get this message into schools - dd is at the moment doing disability awareness in her PSHE classes (Y8) and some of the stuff taught is shocking - that people are only disabled if they are in wheelchairs/blind/anything obvious. DD challenged this and was told off and given demerit points Education needs to go so much further.

I guess for that to happen it needs people like you and I to get out there and do it, but having a campaign to back it all up would make an incredible amount of difference. Would suggest getting the support of Sue March (@sueyy2) as she has a huge amount of influence and knowledge in this area.

Marsh

Love the idea of 'but you look so well'!

I was randomly googling yesterday, trying to find a charity that encompasses all invisible disabilities that might like to help out. Couldnt find one, which seemed weird to me.

Both me and DP have fairly severe lifelong MH issues that iften make basic life very difficult. XH is trying his best to spread around that we are both faking it (although he was perfectly happy to claim carers allowance when we were together...)

Luckily I know this from people telling it to me as a story of how much of a dickhead he is, but it is still worrying.

Oh and YY to 'you don't look ill' - I've had actual MH professionals, when I've given my history, say things like ' but you dont look like someone who could have been sectioned!'

The trouble i find atm is there is so much campaigning to get mh problems seen as "normal" (which of course they should be!) that it ends up negatively affecting those who are "disabled" through their mental health. ("Depression? Oh yeah 1/4 people suffer from that") If that makes sense?
It should be made clear that there is still a spectrum, and definitely emphasised that those at the worse end still dont necessarily look like the crazy cat lady on the simpsons!

People have said on many occasions that my dcs 'look fine'

They have no idea what things a like at home, during the night ( we NEVER get a full nights sleep) or how much effort goes into just getting out of the house they just make an instant judgement.
We've had problems when using disabled parking spaces and also when I used to use the buses, people would ask for one of dcs seats/for us to fold the buggy and simply saying " I'm sorry I can't we need the seat/space" wasn't enough and I felt I had to justify myself with dcs medical history so I stopped using the buses.

I would wholeheartedly support a campaign to raise awareness of hidden disabilities.

That is another key point Hedgehog, that it's awful to feel you have to share personal medical information publically to justify why you can't just do something you're asked to, and it often happens. As a sidebar, I wonder whether there needs to be a badge or ribbon for parents as an understood signal that the buggy is being used by a child who has medical needs or SN.

thegreatestMadHairDayinhistory I have a lung condition too - I got told when I was in the ward by a HCA that "young fit girl like you shouldn't be lying around in bed all day"

Right. That's why I had just been transferred up from resus the day before! I often can appear fine when am just sitting in bed, and rarely need O2 - my O2 levels are usually ok, but i retain CO2. And I quite often will pop some foundation mascara and eyeliner on, cheers me up and makes me feel better if I have visitors.

It got to the point after a handful of awkward situations where dcs were left upset and I was left blushing and feeling forced to justify myself that I started taking dcs blue badges with me to just show people rather than being questioned.

Not all people with hidden disabilities have bb though so some other sort of badge would be a very good idea.

Even with the bb we have been confronted by people when parking in disabled spaces and have to explain that yes we do have a badge, a few people have assumed that only adults get bb and we've then had to explain they are for dcs. It gets quite frustrating and its always on the tip of my tongue when questioned to say " look, here's a blue badge for parking, I have three spare that I will stick somewhere if you don't shut up and get lost" but I haven't so far!

"If your eyes are struggling, perhaps you'd absorb the information better rectally?"

Interesting. I have found people much more considerate of me when I use my walking stick, stepping around me on a pavement, shifting their kids out of the way etc.

Without my stick I have far worse balance and very obvious problems walking, but I am far more likely to be barged about.

DP and I went to London for the weekend and hired a wheelchair because I can only walk tiny distances. I have to say, I was treated like a queen everywhere we went. It was a real eye opener.

Just adding my support! I'm all for teaching people that "don't judge a book by it's cover" extends to health issues too!

giraffes yy to that, I've found some HCAs and even some health professionals as being among the worst when it comes to showing any understanding and compassion - they think because we look young/'well' we should stop 'lazing around' and get off our arses and stop taking up NHS time and money. I've also been told I shouldn't really be in hospital, this when I was in for double pneumonia, on 2 different IV antibiotics, malnourished on fluids, and dosed to the eyeballs with morphine, because I was young and fit. Yeh....OK.