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!

Yes your posts resonates with me so much. And it must be extra hard when it is so rare. Do you have a support group for your disability? I am grateful to the internet as I have only ever met one person in real life with my condition (and we met through a Myasthenia Facebook group)

I totally identify with the military precision to plan what looks like a care free trip out.

In terms of managing stress, my main change was dropping down the career ladder a few rungs, so that my work stress is substantially reduced. Life stress - harder to manage, we just can't avoid it all! How about you? I find it hard that right when I need to be strong to feel with a difficult situation my body lets me down

It's horrible people feel the need to push through so to speak for appearance sakes but I do understand why.

How exactly did I lie? I do often fake how bad my disability is. I fake that I am ok when I am struggling. Theres no lie, it's just not the scenario you expected when you read it.

@lko3 yep...I get it. What seemed like a good idea an hour ago turns into an uphill struggle! It's why I can never plan anything in advance and like yourself it's most often friends/family who just don't get it. I've come to accept that over the years but every so often I have my own little pity party.....then dust myself down and keep on truckin'.

My niece has RA. I really feel for you (and her) . I am lucky my condition is largely painless. Coping with pain must be incredibly hard.

Also get the sticks thing. I have a stick but rarely use it for work. I am trying to use it more when I need it, partly in the hope that it I help normalise mobility aids in the workplace it may help others.

Yeah I find it hard to plan in advance, hard with friends and keeping friends though as I feel flakey but yes just have to keep on!!

I admit to doing exactly the same, and always have
I have Cerebral Palsy and am always in pain and always knackered,but I never let on
3 people in the last 2 weeks have asked me if I'm alright so I obviously don't hide it as well as I think.
Solidarity OP

Thank you for this thread @CassandraWebb it's really acknowledged and made me realise how much I live in fear of being perceived as lazy, by those who are very able. Invisible illnesses suck. to all who live with it.

Of course I did 🙄🙄.

She is faking how badly things affect her that is NOT faking how bad her disability is. Exactly the opposite.

@CassandraWebb There isn't a specific support group for my disorder....although it would come under the umbrella of Muscular Dystrophy. Unfortunately there isn't one in my area and as I no longer drive and public transport is a minefield I feel kind of "trapped" sometimes. I can no longer go out alone (which I absolutely bloody hate) so it's a bit of a faff....which stresses me out and so the vicious circle begins.

Stress wise....the most important thing I've done is to make sure I have "me" time. I really need to decompress if things get too much for me. This was a very hard lesson for me....I'm a people pleaser and it was so difficult , to begin with, to say no. Nowadays the people who matter to me know that all I can offer is emotional support, a listening ear.

You lied in your title

I don't think this helps anyone

Helped me.

Exactly

so many of us hiding in visible illnesses

Not the way to start a conversation, especially in the current climate

How long have you had the condition? Is it treatable?

Dear God - ALSO speaking as someone with a disability can we pack in the attacks on the OP because you don't like what she said. It is not up to a precious few to police what language she uses or what she says. If you'd like a better thread then there's a link for you to start your own. Faking wellness is just as much accurate as faking illness or disability. The fact that it often isn't spoken about in this way is because the narrative is so often controlled by the able-bodied. The OP has every right to her opinion and her use of language and calling her a liar simply because you don't like her title is uncalled for. If you thought it was an attack on people with disabilities, then perhaps you came here spoiling for a fight, and are so disappointed there wasn't one to be had that you created one.

Yes they get the double vision which was scary at a time as they're so reliant on their car for work and a single parent. Like you the ptosis is also a visual sign . Luckily seems to be being managed with medication at the moment

Thank you, I totally agree.

Where's the lie? You assumed it meant one thing, because of societal prejudices and myths.

I get about needing me time, and realising that you have to limit how much you can do for others however badly you would want to do more. It feels like going against who you are as a person.

It must be incredibly tough not being able to go out alone, that's really isolating.

I think MD UK do some zoom type support groups now, I haven't tried going to any yet though so I can't say whether they are any help!!

I've had it since my late teens, but was only diagnosed a few years ago. I think that's part of the reason I struggle to not do things, because I spent so long being told there was nothing wrong with me and feeling ashamed I found things hard.

I can take pyridostigmine which gives my nerves signals a temporary boost - I call it my Cinderella drug because it lasts a few hours and I can only take so many tablets a day.

Some people respond well to immune suppression or an operation called a thymectomy (removal of the thymus gland), they can even go into remission. My body hates immune suppression so we have had to give up on that.

Rest and pacing is a key part of the treatment though , which is very frustrating when my personality type is to want to be on the go!

Yes. was so worried I would lose my driving licence, my car is my mobility and also my children have lots of hobbies and I don't want them to miss out.

Thankfully they were happy to give me a medical licence that lasts 3 years.

I don't drive if I am ill though, as I think it's important to be responsible

I am glad the medication is doing the trick for them

You are very welcome to start your own thread, with a title you seem suitable

Ps if you link to your thread when you have started it, I will even come on and support you @EmeraldRoulette . There's room on MN for plenty more threads on this topic.

Did you have any questions you would like to ask me about Myasthenia?

*deem

Pretending things aren’t too bad has bit me on the arse at work. Now im struggling and they keep telling me it’s all in my head and to be positive. Positivity won’t make my legs work. Although I get what they mean.