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!

That's really interesting. I haven't tried anything other than pyridostigmine which seems to help. I struggle with my confidence now though. I haven't had a crisis. I think I had some symptoms for a couple of years but over lockdown they started to ramp up and pregnancy/labour exacerbated them. It took 6 months to be diagnosed after I had my first which was very difficult.

I had a thymectomy within 6 months of diagnosis and feel like that's helped my double vision and weakness.

I still struggle to write which is frustrating.

How did you find the thymectomy? I didn't have one, they sound quite daunting, especially with a child to look after.
It must have been very hard dealing with all that and your first child

My symptoms became much more obvious after a bad bout of covid, I was struggle to swallow so much and it was like I was drowning in my own saliva when I tried to sleep. Thankfully I had a neurologist appointment that week so they were able to get me sorted. If the optician hadn't organised me to get checked for Myasthenia it might have taken a lot longer to work out what was happening!

My DS is 20 now.

Started symptoms at about 8yo. Diagnosed at 15. The last 3 years have been the worst regression.

However despite it all he’s a para swimmer. Trains ridiculous amounts of hours a week (swimming great for neuro muscular conditions too re physio and being non weight bearing).

He also works as a software developer. It’s just coincidence his passion and now career is m something he’ll be able to do remotely as well as whatever physical state he’s in!

Why would you post a misleading thread title like this when there is enough bullying of disabled people atm? I suggest you ask for it to be changed to reflect what you mean…

Yes, I am sure I am very far from alone. That's why I started the thread.
There are so many assumptions that people fake being ill to get blue badges /benefits etc but I feel that the actual "faking" is all of us who put on a smile and hide how ill we feel

It does say what I actually mean. I posted it to raise awareness that the reality is most disabled people actually fake to hide how much they struggle.

Oh teenage years are a very tough age to cope with that!

I am glad swimming works well for him. That must make a big difference. If I am well I can swim for 15 minutes or so. Varying my stroke helps. But very slowly. I love swimming. I over did it the other day and kept swimming when I could feel symptoms appearing and I got so weak I nearly collapsed.

I am so pleased he has found a career he will enjoy and that works for him. I switched career direction slightly when I realised I had no hope of remission (I don't respond well to immune suppression) , I work from home 4 days a week and it makes a big difference. My employer is also very supportive thankfully

It was the opticians that managed to hurry along my diagnosis too.

Thymectomy is really not bad at all. I have three small scars on my breast and a scar about an inch long at the top of my stomach.

I was taken early in the morning, spent one night in high dependency (as precaution) and then one night on the ward. I was very weak in high dependency but by the time I got to the ward I could walk to the toilet and shower myself.

Recovery was very easy and I was out and about within a few days at home. I felt back to my normal self within a couple of weeks.

I have spoken to someone who has also got myasthenia and they believe the Covid vaccine exasperated their symptoms. What's your thoughts on that? I was pregnant and had the vaccine so either could have exasperated mine.

Interesting about the opticians @BrodieKD . I had been putting off going to the opticians for a while and DH had been nagging me so he felt very vindicated when the optician finally solved such a wider issue for me.

I am glad the thymectomy wasn't too awful. It sounds so scary. They ruled out doing one for me as it had been so long since onset of symptoms

It was actual covid rather than the vaccine that caused the exacerbation for me. However each time I had a vaccine I would get a mini flare so had to plan to do nothing for a few days post vaccine

Ps have you joined the Myaware Facebook group @BrodieKD ? I find it quite helpful. And they are hosting a family festival in mid August but I am not sure I can make it yet. DH said it will be the funniest festival ever as it will be a hive of activity for the first hour or so and then everyone will just have to lie down and rest

I agree with you - I wonder how many people would be interested in clicking on a thread about under-playing disability on a site where there are so many threads that are about people faking it by overplaying their disability. You know, somebody always knows five relatives on disability benefits who are totally fit, have 42 holidays a year and never worked a day in their life...

I think most of us with disabilities mask to some extent or another because, apart from anything else, it's boring to talk about our struggles/ pain or whatever. I certainly don't find it entertaining, and I doubt most people I know find it entertaining either. I prefer to be "can do" and not "can't do", and so yes, sometimes I also overreach and regret it later.

I get what you mean OP. I have a few different disabilities. Sometime I feel so useless and it's hard to explain to people you don't know very well. You end up doing things you know you're going to regret later. Sometimes it's a personal thing and you just want to do something normal and push on. If I do things one day, I absolutely can not do them the next and that's how my life rolls.
I guess to some, it can look like 'faking' it but in reality we're just 'masking it'.

OP and everyone having to minimise and downplay their disability, whatever the reason.

Hey op, I get what you mean, I do the same. I have a genetic myopathy.

so you're basically being a martyr for no reason?

That's it, I really struggle not to be "can do". And I don't want fuss or special treatment. But I see that kind of as a weakness of mine as I pay the price when I don't listen to my body.

I think there's an element of internalised ableism too. Like I feel ashamed /embarrassed to take the lift when when I know I need to

I think the OP knows what they mean. Why would you think that you know better? The title is accurate. Many of us do "fake it". It's about time somebody said what that really means. Reclaim the language. We pretend we are doing better/coping better than we are. Why should the narrative always belong to some able-bodied persons definition of "faking it".

I have a question op, how do you talk to people about it. I tell people at work and there's only 2 reactions; that I am lazy for the days they're like 'lets all walk down town' or shock at seeing me trying to navigate stairs (can't do it) I do find it to be a funny one, invisible condition I suppose.

Have you read the thread? Not being rude but op has explained more on page 1.

Not at all. It's just not as simple as that. I often don't consciously do it. I guess it's internalised ableism/embarrassment/ a wish not to let people down or not do my part. I don't blame others , I know I need to get better at saying I can't do things, but it's emotionally complex.

I don't expect plaudits for doing it, but it's just the reality that far more disabled or chronically ill people are putting on a brave face and pretending to be ok rather than the myth that we fake being ill

That must be tough. Have you had it since childhood or did it develop later?

Since childhood, inherited off my Dad.

I like the way you've done this OP. I agree with a previous comment that nobody would click with the true title.

I have recently been diagnosed with multiple Sclerosis. It's hard to even admit to myself that it's actually a really serious disease. I laugh and make jokes about it, about how I'm feeling. Even though some mornings my left side is so numb I can't move it (think laying on your arm for an hour and it goes floppy) for half an hour at least.

I've masked all my life about many things, always put on that happy face, and it's so so difficult to change that mindset.

Thank you for sharing, I hadn't heard of this.

Exactly this!
It's interesting people are getting angry because I am not "faking" in the way they expected. Everyone I know with chronic conditions does this so much, for all sorts of complex reasons (including societal expectations or judgment)

Oh gosh that must be tough. Are your symptoms very similar to your dad's? Did it help having someone who understood or was it hard having both of you who struggle?