I often fake how bad my disability is- AMA

[CassandraWebb]

Was just thinking about this today, how often I fake how disabled I am.

Apologies for the clickbaity title -what I actually mean is that I often pretend to be fine when I am not. I often do things that I know I shouldn't do because they will make me ill, but I find it hard to not just join in with everyone else. I think it's because it is an invisible disability and I struggle with explaining to people all the time why I can't do certain things.

For instance, if I see someone I know and they stop to chat to me I will carry on chatting even though my legs will be feeling weaker and weaker and I will know I will be ill later. If there is a chair handy I would move to it; but I don't like interrupting an otherwise lovely impromptu meeting.

Or for instance if my daughter wants her hair styled and I start feeling weak i will keep going

Or if people are setting up a meeting room for one of my volunteering activities I will help move the tables and chairs even though I know I shouldn't, because I feel strange just standing there while everyone else is shifting them around

So many examples, and I am sure I am far from the only one!

I have Myasthenia and it is Myasthenia awareness month so I thought it was a good time to post the thread!

I think it's because "they" can't care.

Visible or invisible, I think we share many common experiences. Our lives may be different, but the way people treat us often isn't. If those of us with visible disability get more "recognised", I think it often isn't about better understanding - we are often still treated as "mentally impaired" or worthy of sympathy (I can explain is several languages where to shove your sympathy). I don't expect them to understand. I didn't until I had a disability. I thought things had changed and improved. In some ways they have. But not enough. We are somehow still "sub-standard" - they "care" but often only in so far as they sympathise. We don't want or need sympathy. We are equal. We just need recognition of that fact - we are all different, just as able-bodied people are different.

But I am finding the whole thing very amusing in a perverse way. You went out of your way to clickbait title this thread. You deliberately goaded certain people with certain attitudes to post here. Where are the hordes of benefit bashing / disabled bashing posters? They certainly aren't invisible most of the time. Where are the hordes who all know several relatives defrauding the system? Oddly silent aren't they?

I think we know who the fakes are, and they aren't people with disabilities.

Agreed. And you're right. With visible disability too there's often only such a superficial understanding of what you cope with. Or a failure to understand or be interested in who you are beyond the disability they can see.

And yes, it's been a sobering experiment. I know full well there would be hoardes of people wanting to ask questions and engage in the topic if I really had been some kind of person who pretended to be more disabled to get benefits. But (bar some amazing people, mainly also with disabilities or chronic conditions) noone has wanted to learn or ask questions about my condition, or life with an invisible disability more generally. They want their prejudices reinforced not chipped away at.

You're already doing more than many by volunteering! If you don't want to explain your condition you could just say I want to help out but I've got a bad back that triggers easily so is there anything that doesn't involve lifting which needs doing

I used to volunteer and found people biting my arm off despite MS (my major disability, there are a few others) and falling over backwards to make reasonable adjustments. There are a lot of really great people in the world, maybe I’ve been lucky.

Just an aside vis a vis Blue Badges, the only time I’ve had someone question my right to one it was step-FIL, who when told we had a better chance of finding a parking space in the town centre a few days before Xmas because I had a BB, turned, looked me up and down very slowly and deliberately and said dismissively “you look alright to me”. He then just walked away. DH wanted to hit him; I had to drag him over to the car so we could leave without violence taking place. Never been able to warm to that rude old git since and can’t say I missed him when he died either.

Its not that I don't want to explain (in fact I am happy to be open about it ) it's more that sometimes I guess it's not easy to know how to explain. If someone asked I would say but in a group of people doing stuff there's not always an obvious time /way to explain if that makes sense?

@Jux the key people I know are always amazing and happy to have me there, and know I can't do stuff (and I agree, many people are amazing and understanding) . It's more the peripheral people. Like at both charities I help the chair and the people I work with closely all know (not least because my battle with medication side effects was very visible) but we will get lots of more as hoc volunteers and I feel very self conscious that they might all be rushing round carrying stuff (or whatever) while I just sit there.

Oh @jux how awful to have that said by a family member! What ignorance.

I really feel for those of you struggling with such illnesses at such young ages. It makes my dodgy hip at age 73 seems nothing at all (and it is!). My eldest DD at 45 has Fibromyalgia (took 10 years to get a diagnosis). Like many on here, she hides it. She keeps going. Her two pre-teens are aware but as she still gets involved a lot with them (she WANTS to of course) it isn't adversely affecting them, and as we tend not to see her for more than a few hours maybe once a month we aren't closely aware of all her problems, but I know they are there. Like many on here, she can put a brave face on it all and then spends the rest of the week like a wet dishcloth in severe pain. Her DH is a star I am pleased to say.

She's a fairly highly-paid banking analyst (been there for 24 years) and whilst they are supposed to support her with desks/chairs and other stuff, they don't always do it. Working from home is ideal, but she can only manage 4 days a week (so gets less pay). I bet her colleagues/managers think there is nothing much wrong with her.

She's just got her redundancy notice. Her DH is on NMW so her income is (was) vital. She doesn't believe she'll ever get a suitable job. She will lose her private medical insurance, good pension, work-from-home agreement and working only 4 days. She is emotionally at rock bottom.

But out and about she looks fine! However, she tells me that she now has no regular social contact with anyone, depression at times, fear for the future of herself and family, and it breaks my heart. Sadly, my DH (her dad) is v elderly and has peripheral neuropathy (brain and body don't communicate) so we can't really help her.

It also seems to me that my DD has been almost "written off" by the NHS. She has to spend huge amounts on private physio, podiatry, mental-coping strategies, mindflness classes etc. and not only has never claimed a day's sick pay in her life has just been turned down for PIP. How disabled do you need to be?

I am not asking for anything on here, just to say that I do understand your problems everyone and I wish you all the best. A good friend (62) has spent most of her adult life fighting RA. Again, on good days you wouldn't know she had it, but I know it and so does her family.

Good luck everyone.

@madmeg1952 oh I am really feeling for your daughter. That's utterly rotten
Yes fibromyalgia is a condition that is very much a poor relation in terms of the care you get and also the support you get .

I can very much relate to her fear of finding a job that will support her.

I switched from private sector to the public sector and they have been much more supportive. But of course I don't have the private health care so had to use savings when urgent tests were needed. It might be worth her considering though

Am currently in bed after a day in the office, all my muscles have stopped working and I feel dreadful. WFH can make all the difference.

Oh bless your poor DD, that really sounds so hard. You sound a wonderful caring mum, and she is very fortunate to have your support.

I've had a lot of health issues over the past decade after a head injury (mild TBI/concussion and post concussion syndrome and terrible breakdown) a decade ago, then a devastating injury from a prescribed off label antipsychotic after it, that is a permanent neurological involuntary movement disorder called tardive dyskinesia (which is a bit like Tourette's and Parkinson's disease combined).

I absolutely agree that these conditions are so hard to live with, especially the invisible ones. I've just had my third concussion a couple of weeks ago and even after posting on the Mumsnetters with Disabilities board, people are still totally believing that a concussion isnt a brain injury! I hope others aren't so ignorant, but sometimes I really can't believe people can be very uneducated and think it's all ok when your body is just not quite working but you look okay.

I think i won't be in receipt of any benefits, as I've looked into things like PIP and ESA, and it's all about just how daily living is affected, nor how much you can't work as your brain doesn't function properly 😞😪

I've been at rock bottom many times too so i understand and empathise. Hugs to your DD.❤️

Thank you ladies.

Wow you have had a proper run of bad luck @ForeverDelayedEpiphany it must feel incredibly frustrating to not be believed never mind understood

I am wondering if there is a charity that might be able to help you with making a case for benefits? I know Myaware and Muscular Dystrophy UK both help people with Myasthenia advocate for themselves (I still haven't got round to doing it though, I think I just keep hoping I will magically get better!).

Thread's gone a bit cold now, but I just saw this article about the police trialling a new wrist band pilot for neurodivergent people. Not sure why it's only relevant to the police, but it made me wonder whether wrist bands for all invisible disabilities are a good idea! https://www.bbc.com/news/articles/c1ljmd5my63o

Interesting.

I have a medicalert wristband. Mine has basic details ("Myasthenia Gravis, Anaesthetic Risk) and a phone number they ring for more info.

But I have seen newer ones with the QR code.

I always worry that I won't be able to communicate my medical needs right when it is most important that someone grasps that I need different care.

@CassandraWebb hi. I know this is an old thread but I don’t know anyone else with myasthenia so thought I’d say hi. Ima very old MNr but not been in for years ☺️

Hello
I remember you very well ❤️. I am also a v old mumsnetter but have had about 50,000 name changes!
It's weird having a rare condition isn't it.
How are you doing with it?
Mine is ok at the moment provided I don't do much physically. But I like being busy and active so it's a really rubbish limitation
Do you use myaware at all? I am on the Facebook group, I "know" people on there but I don't know anyone in real life with it

Hi!
im ok but fatigue is troublesome. Even tho I’m in remission. Had a spell in hospital last march due to shingles running rampant.

I use myaware occasionally
I got dx during covid. Couldn’t see a GP even though I had no functional sight due to double vision, couldn’t swallow and breathing bad. I ended up in A&E in crisis. GP kept telling me it was hay fever and Optitions gave me prism glasses but didn’t refer me on.

could have been worse . I’d discounted MG by then and thought I had a brain tumour 🙄.

it’s a bloody odd condition. I really need a blue badge but can’t get one and turned down for PIP.

I like being busy too. I have adhd so trying to slow down is horrible. I’m in myaaware group but don’t go on social media much now

I got dx in COVID too, I think it i had had it about 2 decades by then, but GPs kept dismissing me.
Covid made it unmistakable, I was drowning on my own saliva in the night and it was awful

Its such a baffling condition isn't it, I can understand why the pip/blue badge assessors don't get it in a way as I still struggle to process how much it fluctuates. I cope by managing my activity level. If DH didn't do most of the cooking and housework (and the cleaner the rest) I would get ill so fast

I am lucky I can work fully remotely so can still work at least

Being that ill with shingles must have been awful

My Dr was concerned it could be MND (it's in the family) so a MG diagnosis was a huge relief. But I think that means I was possibly too positive about it to begin with and didn't really process what it meant

Yes! I was grateful it wasn’t degenerative so was positive but it’s turned my life upside down. My OH has MS and has monthly chemo to keep him in remission for Myeloma so I’m his carer. I’m lucky to work part time and when im
well, I’m great but when I’m not, I can’t do anything . You must have been really scared about the MND

Oh thats a really tough juggle. It's a hard balancing act anyway with Myasthenia but trying to manage it alongside caring must be really hard.

I struggle with how misunderstood it is. People (outside of family ) only see the good moments and so have no idea what it's really like.

I paid into an ill health insurance policy for 30 years. I became so unwell I couldn't work or walk, but they said MG wasn't on their approved list of conditions they cover. Apparently we should know in advance which debilitating and life changing illness we are going to get.

Hello. Bumping a but
i was on MN fir years but not so much now.
I’ve got MG and it’s so rare that I have no one to talk about it with.
tbh Im going through a throughly fed up phase 🙄

lol. Just seen I posted on this before. Im such a twit 😆

Yeah it's really hard having a condition that people just don't understand.

I feel that other than those in my household most people just don't understand what I'm dealing with.

I do that all the time sometimes even with threads I started