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?

Yes, good idea. I get such a different - much more sympathetic - response now that my arthritis is so bad that I limp dramatically. Before I limped it was actually often much more painful. People like to be able to see something is wrong, and it would be good to make them think twice about invisible physical disabilities and health conditions, in the way that the "1 in 4" campaign made many people think differently about mental illness.

I cope with having a rare "invisible" illness (CIDP if there's anyone out there - Chronic Inflammatory Demyelinating Polyneuropathy). I'm numb from the knees down, in my hands, my lower face/lips/tongue, have balance problems, no proprioception (if I can't see my hands/feet I've no idea where they are - the practical way of describing this is I can't clap my hands with my eyes closed - I miss!!) and severe fatigue and pain in my (otherwise numb) feet.

Mostly I look pretty normal, though I've been told I look pretty determined when I'm walking!! If I'm going to be in a busy place, or feel vulnerable, I take my walking stick even if I don't need it, and always use my wheelchair in shopping centres, I'm too frightened of being knocked over.

I'd be right behind a campaign of this sort. My younger dd2 spent 5 years being treated for Perthes Syndrome - hip degeneration - but is now fine. But the number of comments we got while taking her on public transport in her MacLaren Major buggy in her school uniform made me see just how weird people are about this sort of thing (really, don't get me started on the non-folding buggy brigade!!). She "looked" normal (sitting in her school-logo'd sweatshirt reading her reading book), but she couldn't put her foot to the floor without pain.

Invisible illnesses exist, even if you can't see them!

Oo, good ideas! Like the suggestion of blogs of various people. I also saw someone doing a photo display thing of "this is what an eds sufferer looks like" for eds awareness month in may

I was thinking about this earlier today. I was waiting for the bus to work after dropping the DCs at school and was already very wobbly (I don't normally do two shifts in a row specifically because of my health, but due to Easter I did Tuesday and Wednesday). And then I saw a couple of people I sort-of-know. TBH it made my heart sink.

Basically I can find conversation exhausting. Having both social anxiety/interaction issues (possible ASC) and CFS/ME mean it can physically and mentally overwhelm me.

I hate hate hate appearing rude and not really engaging in small talk (basically I responded but didn't initiate or particularly engage IYSWIM) but the fact is, something as simple as a little five minute chat can be all it takes to tip me into complete exhaustion. It's made me cry in the past, when I've felt unable to say "sorry I'm not up to talking right now" and have therefore lost the quiet time that I really need on the journey (only 20 minutes but makes a massive difference), and arrived at work stressed and overwhelmed.

And yet at other times I am perfectly sociable and animated. I managed a trip to the park after school and chatted for ages with a couple of people. So people I've chatted to before will expect it of me. But sometimes, like this morning, I can't manage it. I must appear very rude and standoffish. :(

Ooh logs of good ideas :)

Looking and others - I hope you don't think I was trying to exclude people when I suggested focusing on the physical - it was because that was the last opinion then the thread went quiet. I don't want this idea to die so put forwards an idea to see if that was why... And it obviously isn't :)

I really like the idea of the eds 'this is what an eds sufferer looks like' .

It's a nice way of capturing the 'you can't tell by looking' idea that is at the heart of so many invisible illnesses...

Lots not logs!!!

I seem to remember a set of prompts from a few years back in an email that went out on blogs asking people with chronic illness to fill them in, that went something like 'the invisible illness I have is.....' and then went on to prompts like 'things that have changed the most are...' and 'things I do now that I didn't used to....'. I wish I could remember more of them, they were all very open ended but very useful in drawing out the adaptations people had to make in their particular situation and the reasons behind them.

Another bump
Havng a rough day here :(

Sorry to hear that Beyond - hope tomorrow is a bit easier on you.

Fuzzpig - yes. I get this totally. that feeling of exhaustion, not wanting to be rude but really not having the energy to keep a conversation going. I often think people who don't know me think I am either very shy, standoffish and rude or just rather boring :( I get so very exhausted talking with people on worse days, sometimes I have to ask folks not to visit because I know I just won't be able to talk to them. I have good friends who get this and will just come and sit with me and talk at me and know that makes me happy. But to get others to understand this....it's hard.

I like the blog idea...but do feel it would be preaching to the converted in that people who would take the time to read a blog on this subject would already have some idea, compassion or at least interest in it - how to reach those who just don't is the challenge here, and I really don't know the answer. I guess things like blogs may be a drop in the ocean but along with twitter updates, fb statuses etc they all contribute to getting more knowledge out there.

Have MNHQ commented on the possibility of this yet?

Had a sleep, still feeling rough but at least my headache has gone

Ah yes, forgot to tell you all didnt I
Had an email last night - hq had already seen it before I flagged it to them and are watching with interest, but rowan is in charge of campaigns and on holiday at the mo

Good idea

Sorry that wasn't very clear, I meant less to do it by blogs than just suggesting possibly a short list of prompts as a means of people easily sharing information. For example on a thread that people could use the prompts to reply if they chose to, that gives a lot of information in a short, easily accessible way.

That's good BeyondTired I think it's such a good idea, such a big need, and mumsnet is one of the only places (apart from condition specific forums) where I've 'met' people who have the same problems due to invisible disabilities - so v well placed to run this campaign.

Btw my Occupational Health meeting at work went really well - was so worried of face the kind of prejudice and ignorance so many on here have experienced... But I got a thoughtful and knowledgeable doctor :)

Phew, thats a relief misc :)

By the way, may i point anyone who isnt aware of it in the direction of the spoonies thread (currently residing in "disabled parents"), they have been fab for support to me

Definitely.

Bump again

Well said Dragon. Invisible disabilities or those with mild physical disabilities are often overlooked & the perception can be that they should just get on with things. Awareness needs raising.

Bump.

So glad your meeting was OK Misc

I will look up the spoonies thread, used to go on that board a bit but was v quiet.

Thank you fellow bumper, mad

Just wanted to show my support for this. DH is in this position, has been his whole life, sometimes people make unfair judgement about him as a result. He has a rare condition, of which he falls into rarer sub-sets, so even those who know about the illness will sometimes say, "Oh, so-and-so has that and is fine". Unfortunately for my DH his illness is very much active! On the outside he looks problem-free, but I'm the one who sees him at home trying to manage it, and struggling with the effects. He gets embarrassed and is very private and will tell everyone he is fine too, as understandably he doesn't want to detail to all and sundry his medical state especially when he has been dealing with this since childhood. One of the registrars at the hospital called him a veteran! Such early onset is one of the very rare sub-sets that he falls into.

He gets odd looks if he pulls out his Radar key in public to use the disabled toilet when another is not available. I don't know what they think he must have done to get it, it's not like they're hard to get hold of!

Additionaly I have a chronic illness, it is not a disability and it is much more easily managed than conditions like DH's. But it still impacts me, and people don't quite 'get' it. Part of it means I get tired easily and have musculoskeletal problems. According to many, a lack of exercise is my problem Notwithstanding the fact that I am active, if exercise was the cure I'm sure the NHS would be much happier recommending that than handing out free daily medication for life! (I have a medical exemption certificate as a result of my condition)

I don't expect people to know that you have an unseen disability, or to regularly think it's possible, especially if you're like my DH and never talk about it with others. But what I dislike is the way people make judgements, like if you've been off sick for a long time, or if you go to the toilet regularly, or have regular breaks, or often look tired, for example. I find that too often people class you a 'skiver', or lazy, or similar, without even beginning to entertain the thought that you might have good reason, because you "look fine" to them.

I've nothing much to add except that I'd like to show my support.

My DS is 5 and has an invisible disability. I'm just starting to understand the difficulties of living with the quick judgements of some people (when we ask for a disabled ticket for example, or when people spot that he's in a 'nappy' still). Also getting a little fed up of explaining that he's not shy, he just doesn't communicate much.

Anything that might make people stop and think before they comment or pass judgements on strangers lives would be great.

Are MNHQ actually aware of this thread? It might be good to report the OP or start a thread in Site Stuff so they see it.

I think the 1 in 4 Time to Change campaign is a mixed blessing as has been alluded to earlier in the thread. It's great that there is less stigma attached to mental illness than there used to be but it does kind of downplay how disabling MH conditions are for some people. Also, as someone at work pointed out, it's usually relatively privileged or financially secure people who can risk being upfront about their MH condition. Lots of people still have to hide it if they want to get or keep a job.

Yes plenty, i have a thread in campaigns linking to this one and also have reported it. They got back to me to say they are aware of it, but rowan deals with campaigns at hq and is on holiday at the mo :)

So until she gets back, im just trying to keep it bumped so people can see it

Don't know if you are aware but there is meant to be a day of blogging against disablism, might be worth getting a few people to write specifically about invisible illnesses/disabilities for it.

brief reply, I'm surprised no one had mentioned But You Don't Look Sick and Spoon Theory.

totally disgusted with some replies. So, because you don't want attention being brought to you,those of us who are too young to use crutches should put up with it,yeah?