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 horrible, if it really bothers you (I know it would for me) would wearing a sunflower lanyard help? I don't know if that would make it worse or not really though as you shouldn't have to announce that you have a disability.

I think I'd be too self conscious to wear it, I just wear my sarcastic retorts :D Maybe that's worse ha

I don't wear the lanyard as they feel too much of a faff, but I have a sunflower wristband instead. It's probably too subtle to make much difference but it hopefully gives some people a clue at least

That's it, often you just want to get to with your day not talk about your health.

But it's tricky in situations where people might judge you as lazy. For me it's things like when I volunteer to help with events at the children's school etc but I really shouldn't do any lifting /carrying. I don't want to have to broadcast to everyone but I feel like I look horribly unhelpful. It's probably largely an internalised issue

Totally get that, it took me a lot to accept my life would be better with a wheelchair. But once I had over come that mental jump it felt easier

That's awful.
I have had a few people treat me like I must be stupid. I want to say "it's my speech that's slurred not my brain". My brain knows exactly what it wants to say, it just can't get the signals to my speech muscles.

That was my first thought, especially women.
Most people i know mask their pain, be it a disability, chronic or short term.

Equally, people fake loving their jobs and relationships despite a mental health breakdown.

Sometimes there's no one to pass the button to and means must, so you struggle along.

I wasn't suggesting I was unique. Far from it.

It's much more that in all the discussion about people faking disability the assumption always seems to be that people are acting more disabled than they are (for benefits, blue badges, special treatment or whatever) whereas in my experience the reality is that a much more commonplace scenario is that people are putting on a brave face and hiding how much they are struggling.

(And you are right, that doesn't just apply to invisible illnesses but also to neurodiversity, mental health conditions etc, but I guess I felt like a thread to discuss invisible illness because it's Myasthenia awareness month and it seemed a good time to talk about it and related /similar conditions)

Even in this thread the minimising appears yippee

And no pretending to love your job is not the same as having to slap a smile on a muscle wasting disease that affects my body, my heart and my lungs.

Thats a good point. I feel a bit ashamed i accepted the minimising rather than pointing that out!

I think most of us fake it. I know I do. DH gets really cross with me, "you can't do that, you know you can't, please be reasonable....." etc.

My main thought is, I can live like dh wants me to, being careful etc and then life will last longer but it's an uninterrupted GREY line stretching out ahead of me with nothing much to look forward to and nothing much to remember, nothing much to enjoy.

Or I can live as I want to, which is more bright and lively, colourful and WORTH it.

Unfortunately, for him it isn't worth it. He has to look after me when I'm laid up because I've spent hours in a garden centre, or cooked a special dish that I really wanted to try but no one else would (be able to) make it.

For me, totally worth the exhaustion and pain next day, For him, not.

Who trumps who?

We used to get help but I didn't need it then so eventually it was withdrawn. Now we do need it, but the Council, NHS, the Country can't afford it. So we don't get it.

You're the one minimising mental health.

I didn't say it was the same, I stated how people minimise different things.

People take their lives from being bullied at work whilst not seeking help and pretending everything is ok.

It's not a competition, your disability doesn't negate other types of suffering.

Yes that's a big dilemma isn't jt the impossible balance between actually living life a bit (and paying the price) or always living an incredibly limited existence.

DH is pretty good, he knows I need to use some of my ration of activity for things I enjoy, and he accepts he has to therefore shoulder the majority of the housework. I am lucky though that I can work full time (mainly from home) so I contribute that way and it means we can pay for the cost of a cleaner to make a dent in it. I know I am hugely privileged to have a job I can still do despite my Myasthenia, and that I have a supportive employer.

I totally get that, and was agreeing with you as in I thought that's what we all did, but also adding other examples I'veseen from friends and family.

It's not one thing (disability) but a range of other things people feel the need to cover up, to their own deterioration.

Mentioning other ways people mask isn't minimising your disability.

And you, and others, are absolutely welcome to start threads about that. And I would be happy to ask supportive questions on those threads.

But this is meant to be an AMA about invisible disabilities.

And, for the avoidance of doubt

• coping with invisible disabilities often has hugely detrimental impacts on mental health
• people with invisible disabilities are often misunderstood and bullied out of the work place
• people with invisible disabilities often cope with deteriorating relationships ( romantic and familial and friendships) because noone "gets it"
• people with invisible disabilities are often horribly lonely and isolated

-.people with invisible disabilities often don't get any benefits (despite the myths) but face enormous additional costs-

• people with invisible disabilities face all the same issues as everyone else, alongside their health conditions. We still have to deal with redundancy rounds or cheating partners or difficult teens or boring jobs or any of the other things people have to mask

It's not a competition, other types of suffering don't mean we can't talk about and try to educate people about what we deal with.

It's curious that people would love this to be a thread where they can froth over someone cheating the system, but aren't really interested in the constant reality of faking being well despite crippling pain/partial paralysis/ horrible medications etc . Indeed, it's like they don't want to learn and ask questions about what it is like

But it sort of is minimising it if you bang on about it on a thread about invisible disabilities.

I don't jump on threads about Autism or ADHD etc and try and insist they talk about my Myasthenia instead.

Crack on.

I have to admit I didn’t know much about myasthenia- I’ve heard of it but only really knew of the eye symptoms. I’ll have to do some more reading- thank you for making me aware of the awareness month!

I’m autistic and have chronic health issues- fatigue, pain, allergic rhinitis- as well, and I often hide the extent of my symptoms or push myself more than I know I should. I’m very lucky that my friends are in a similar boat and we can all unmask at least a little around each other, but I know the pain of overexertion well. I’ve been trying to be more honest with myself and others to save myself some of the pain and build stronger relationships, but it’s not easy to fight against a lifetime of conditioning. I appreciate reading everyone else’s experiences!

It's interesting that on this whole AMA thread I have only hand a handful of questions about my condition/life with invisible conditions. Mainly from those with other similar conditions.

It's like people don't want to know or imagine what our life is like. Or don't care. Or don't believe it can be that bad. Or think we can positive think our self better. I can't use willpower to overcome Myasthenia weakness any more than you can fight against the effects of a general anaesthetic or will your phone to make a call when it has no signal

It definitely helps to find people who "get it" doesn't it

Hey OP, have changed to one of my other user names to avoid being identifiable but just hopped on to say my DD has an unknown congenital neuromuscular disease so I have some understanding, through her eyes, as to what you have to deal with daily and am sending you fist bumps in solidarity.
At 6 months we were told it was likely she had congenital myasthenia (positive emg's, no antibodies & family history of myasthenia, I myself have chronic fatigue) and until she was 4 we lived with the ?myasthenia label; then it was removed when all the genetic testing came back negative. Over the years we have been back & forth on whether it's an as yet, unknown myasthenia.
She has neuropathic and myopathic changes/features & each & every day is tricky. At home she walks about unaided mainly but even for short times out & about she needs her power chair and people can be very judgy when they see us park in disabled space or she gets out 'normally' and into her chair 🙄
Her muscle weakness is quite profound, she also has a feeding tube & stoma as her gastrointestinal system doesn't work properly and she has autonomic dysfunction. We have found the spoon theory or battery theory useful analogies in trying to explain to those involved with her day to day.
It's got harder in some ways as she's got older because she feels so different to her peers. She hates when her speech gets slurry & she can't get the words out & this increases her anxiety which can exacerbate the muscle weakness too.
As her Mum, it's been quite a steep learning curve. Trying to give her space to learn how much she can do safely and not interfere has been tricky but equally I don't want to stand in her way and want her to try as many different experiences and opportunities as possible.

It's hard planning for the future and worrying about what support (or not!) will be available to her (aside from me). It goes without saying that I wish DD didn't have to deal with what she does or all the things she has gone through but in other ways, as a family, I think it has made all of us appreciate the here and now and we have met some amazing people along the way that we likely would never have encountered if this wasn't a part of our lives.

I do not have any speech impairment at all. I DO have a PhD, an MSc and an MA. Also a GoQ. And Prince 2 qualified. My best friend is a Director of Social Care. And she gets f**ing annoyed when we are out and people actually answer HER when I asked the question! If you have any form of visible disability, I really do not think they need impaired speech to think you are stupid.

It must be very hard not having the precise diagnosis. Purely just because I know for the different myasthenias there are often different treatment approaches. They have discovered so many new types of Myasthenia recently I am absolutely certain there are still more types to discover.

However hard I find it as an adult, I always think it must be many times harder to cope with it as a child. And yes you are right, it's the impossible thing where you get stressed about having slurred speech and then the stresses exacerbates the symptom further.

Hopefully as she gets older further research will mean there is even better understanding and more treatment options too. It must be so hard as a mum to help guide her towards independence.

Totally sympathise with the judge looks when she walks normally to get in her chair! I've definitely lived that experience.

Thats very very true! It was an eye opening experience when I started using my wheelchair, and realised some people would talk to me like it was my brain that didn't work rather than my legs! I hugely sympathise, it was a horrible shock for me to realise that some people navigate that world every day.