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!

Stop trying to police op. Go away if you don't like it.

Not if they are capable of reading beyond the first two sentences. And if they aren't capable of that they are probably beyond hope any way

Thank you.
Imagine attacking someone who says stress makes her ill. Bizarre.

I am going to go to bed now as I can do with out the aggression.

But I will look back tomorrow as I am happy to chat to people who have questions about Myasthenia, or invisible illness, or just want to chat about coping with the constant headfuck of a fluctuating /invisible condition and the conscious and unconscious masking we find ourselves doing to cope

I was replying to feeling meh and it wasn't a comment on your post or situation.

Good for you I'm disabled to and I do care about the title and I'm allowed to have that opinion. I don't like clickbait especially when it's on a subject that is already getting so much crap of everyone

I am angry at them and your title doesn't help the situation

That sounds like you really appreciate the impact on your children. Being prepared to use a wheelchair so you can go out and about with them must have been a big emotional step for you.
Sorry, I realise now my post was maybe coming across as a bit critical of you and the other posters with chronic diseases who've posted. That wasn't my intention, I was just trying to share my experience of understanding why people might hide/fake (?!) a disability.

I totally get it.

We fake being well. I’m currently lying in bed unable to sleep due to the pain. I usually have to wait until I pass out with tiredness. It’s utterly soul destroying to sleep every night knowing you’re getting up to a stiff, painful body in the morning.

No I didn't see it as critical at all. On the contrary, it's helpful to reflect on how my management of the condition affects my children

Hi!

I think you were talking to OP, but wanted to answer as recently diagnosed MS and recently told my kids. They are 19/13/11.

They've taken it really well, because as you say I hide it from them. They are trying to help around the house more (19 is at uni), and I bought a walking stick, as my left leg is just sometimes very bad, and they just took it in their stride. I told both schools in case they had questions that they didn't want to ask me. I also told them surrounded by other family members, my brothers and sister so they know we are supported.

I seem to have a bad month, then great for 6. That's happened twice so far. I'm coming to the end of a bad flare up/new symptoms. I'm waiting on a lumbar puncture and have been referred to MS team under expedited letter due to recent symptoms.

I've got a cleaner, 2 of them come weekly for 2 hours. Highly recommend!

I'm noticing that I can't socialise more than one day in a row, without being exhausted for a week. Which is difficult as I'm a very social person and me and my family and friends like to socialist a lot. And I've not tried going on holiday since symptoms ramped up, but I'm off to Italy soon!

I am also lucky that work are being amazing, even my colleagues are all about supporting and looking after me. But I do work in wellbeing/disability!

Sorry, rabbited on there for a while! I hope you're doing okay!

Well why not start a thread with a title you feel will help?
Posts on disability awareness aren't rationed.

@HiCandles I've tended to try and hide mine due to a mixture of bullying and a damned if I do damned if I don't attitude due to it being invisible (until people see me try to climb stairs etc).

I can totally relate OP. I have a rare form of an extremely rare neuromuscular disorder. I'm literally one in a million according to my neurologist....lucky me...ha! I do all the "masking" as well. It is an invisible disorder and I "look" disgustingly healthy but what people don't realise if they see me out and about is the almost military precision I've had to make before hand. My triggers are being cold, hungry, hormonal changes and stress. Being post menopausal now has helped with the hormonal triggers though.
Like you I mask , mainly because it's practically impossible to describe my disorder and how it fluctuates. I remember when I was first diagnosed 40 years ago....the neurologist told me I'd have to learn to advocate for myself because as he said most GP's would never have someone with my disorder in the practice. Over the years I've found this to be very true. One example was when my GP prescribed Statins....I had to explain that my condition means I can't take them and he had too look online to confirm this.
Stress is my biggest trigger these days....everything else i micromanage. Can I ask you......how do you deal with stresses?

Did you read the post?

Yes they said that, and explained why. Did you have a point to make?

Because everyday their is a thread on here about disability and everyday it gets filled with people slagging of disabled people and how their faking it to get benefits and how someone's neighbour is on pip and theirs nothing wrong with them and
Mumsnet does nothing to stop it. Clickbait titles will not help when people are just scrolling past they will be like "knew it I bet so many people do this" and tomorrow or in a few weeks time someone else will post about disability and people will come into the thread and say there was a poster the other day saying she fakes how bad her disability so people do,do it

@JeanMarie Sorry I know I'm not op but I just wanted to say it's so perfect what you just said. What you said so resonates especially about 'behind the scenes' military precision plans. I know what you mean on that one. There's so many hidden aspects people don't see isn't there. I'm like you, I look so healthy so it feels so hard to have to say 'hey I can do that' and then maybe halfway in the day have to say I'm struggling. Friends and family have not always been very forgiving over the years.

Can't see any slagging here, only people sharing rare experiences which I say for me is a breath of fresh air.

So you lied as clickbait
Weird
And now I cba. Great job raising awareness. 🙄

Give it time

But you could be arsed to write your mean post?

Stop bloody moaning.

Stop being bloody rude

As someone who is disabled with rheumatoid arthritis plus a bit more I completely understand. I should use my 2 sticks but this means I can’t carry my work bag so I tend not to use them even though I do fall. I also carry on regardless even though I should be pacing myself. I think it’s human nature to want to be seen as doing ok

for you OP . I was very unwell nearly 20 years ago. Taken in to hospital and doctors told me they suspected either MS, MG or epilepsy. None of them good. When I tell you being diagnosed with epilepsy was a relief!