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!

Think my way over to the canteen. Beam me over Scotty

The reason is that people don’t want to be slaves to their conditions. They want normal lives, and to have fun, adventure, and social interaction. But when they do, their bodies pay for it.

Plus, who wants to hear someone saying, “I can’t” all the time? Society isn’t tolerant of hidden illness!!!

Clearly helped a lot of people on this thread 🤷‍♀️.

I am in remission from MG. Mine was picked up when I went to my optician because I was seeing double. I was given various drugs all of which made me very ill. I was on prednisilone for 4 years, put on loads of weight and developed severe osteoporosis. The miracle treatment for me was IViG. A week of infusion got me walking about normally for about 7 weeks. Then I was told I couldn't have any more because of the cost.
I was weaned off the prednisilone and immediately developed RA. Now I can still barely walk due to pain and still have double vision. I am on methotrexate injections.
My life is controlled by flare ups and immunosuppression. I just had gastroenteritis and am into my second week of being completely wiped out.
Living as near to a normal life as possible means loading up with painkillers, putting a brave face on, then collapsing for a couple of weeks. I try not to mention my illness because I am sick of people telling me how to cure myself.
OP, have you been offered IViG? It is the treatment of choice in USA because it keeps
(insured) people in work. But it is rationed here due to cost.

Oh wow, that's not ok! Imagine telling someone with a broken leg they could heal it if they just think positive. It's so ignorant. So sorry.

Who will click on this thread for exactly that reason, then hear the other side of the story.

Fortunately I never had that - seeing me struggle now isn't up for question as I can barely stand / walk. But on a practical note I would do two things. I'd not pull punches - tell them what you said here. Sometimes people are trying to be kind and miss the mark, which is understandable. But telling you it's in your head isn't missing the mark, it's aiming at the wrong thing! A few "Positivity won’t make my legs work" comments back will shut them up. Sometimes reflecting things back is the best way of pointing out how stupid they are being. You can soften the comment a bit by adding something that makes it clear that you are drawing a line but in a nice way.

Also, get back (or to, if you haven't been before) occupational health and talk to them about how you are, good days and bad days, and what you need. So if you can't get to the canteen, what can the employer do to help you (mine, at one point, arranged for me to have deliveries from the canteen when it was hard to get there)?.

Couldn't agree more. In fact (although mine isn't hidden) who wants to be saying "I can't" all the time?

It’s sort of my fault but even when I e spelt it out they are still saying it. I feel like saying look this isn’t kill bill I can’t tell my legs to work 😅

Thank you, that's exactly it

Plus years coping without a diagnosis and thinking I was just lazy mean I have internalised a lot of shame /ableism

@PhilippaGeorgiou Thank you, that's a great idea about the delivery, it's my fault really, I've never been great at advocating for myself as I was bullied so badly as a kid about it, I tried to hide it as much as I could. When I've been open with employers I've been told things like 'just go the gym and get fit' or just not invited to social stuff. This is about 15 years ago but it really made my attitude what it is today. I'm not saying I want to define myself by it but I find it hard to get the balance right as my ability changes.

I totally get that. To be honest it is always harder to advocate for oneself no matter what the background. Much easier to fight for others! That can be where occupational health are a help, as are union reps. When my (new) manager decided that I wasn't leaving quickly enough after several months of "wouldn't it be easier to manage your disability if you retired" so decided to make me redundant, I could stand up for myself (and the recordings of the conversations she denied ever happened no doubt helped) but having someone else to advocate was a godsend.

@Thereisnopartofmethatdoesnthurt Oh you really were given a nasty time with the meds! I am glad you are in remission but that must feel like small comfort at times.

I was on prednisolone for about 5 months and in that time I put on so much weight and my face was unrecognisable. A few times I had men yelling "fat " at me just because I walked past them in the street. It was eye opening and awful. However the prednisolone also made me so weak I ended up basically bed bound so I had to stop it. The weight and water retention came off. I feel so angry that people are judged for being large without any understanding of the possible causes.

I then tried mycophenolate and that gave me terrible anxiety and also damaged my liver badly, so I got more and more unwell (and on a vanity note - lost a lot of my hair).

For now I have stopped all immune suppression and am just trying to manage with lifestyle change (ie lots and lots of rest, paying for a cleaner, a low stress work from home job -am just lying down for a rest right now as my neck isn't good after lots of talking, I feel lucky I can clock out when I need to) and pyridostigmine. I think if I have another bad flare they will try IVIG. For now, my life feels very limited but I am glad to be on minimal medication after bad experiences

@Thereisnopartofmethatdoesnthurt agree to about not wanting to mention my illness too much as people try and suggest ridiculous and frankly offensive cures.

If yoga and healthy eating could cure me I would never have been ill in the first place, I was very healthy and did yoga several times a week!

I've had that. I know people mean well but grr :D My old manager told me 'just go to the gym and build your muscles up' for neuromuscular disease.

Yes it's the total lack of understanding!

Even if I could develop enormous muscles safely, if the signal can't get through to them they are completely redundant. It would be like buying the worlds biggest TV but not being able to plug it in.

Yes exactly!

Do you think there's a lack of understanding of the neuromuscular conditions? Mine is very rare too and I wonder if most people just don't have any experience of them. Not saying it's an excuse to just blurt out anything but it's definitely hard to find understanding.

Yes definitely.
I mean I hadn't even heard of Myasthenia until the optician said he thought I had it.
And then once I started reading up on it so much made sense. Things like the fact that if I try and clap (at the theatre for instance) I will get ill very fast.

I also read somewhere that instead of weakness or fatigue what we experience with Myasthenia is better described as "partial and fluctuating paralysis" and I actually think that a shift in language might aid understanding.

I think it's hard to get people to understand because it involves getting into quite technical detail about how the body works too if that makes sense?

I think people can also be afraid to ask silly questions so they don't ask anything when you mention a condition they haven't heard of, but actually most of us would welcome (respectful, supportive) questions that will help aid understanding.

I think it also doesn't help that people only see us "at our best" because when we are most ill we stay at home. So they only see a very skewed snapshot of the conditions.

Thank you @CassandraWebb that really makes sense. Sometimes I forget to see it from others point of view, yes it must be hard to ask when it seems quite technical and then the fear of asking something silly. It's hard to get the balance right. To the untrained eye I just look a bit clumsy when out and about but I try my best to be careful which takes away a lot of energy itself. I've had comments asking if I'm drunk!! Embarrassing haha.

Yes that's definitely true about the snapshot. I'm at home when I feel bad or fatigued so it's rare it's seen.

@CassandraWebb Do you use walking aids?

@lko3 yes I can imagine that trying to be careful is tiring in it's own right.
I have slurred speech some of the time which can make me sound drunk. At home with my children/husband we can laugh about it, but I find it embarrassing talking to strangers or work colleagues when I sound drunk.

I have an electric wheelchair for being out any length of time (but sometimes its such a hassle because places aren't as accessible as they claim). I also use a walking stick sometimes but it doesn't help an awful lot except with standing still. It does help make my very invisible disability a bit visible though.

Forgot to ask @lko3 do you use walking aids?

I'm at the stage where I need to but struggling to accept it. Not in a vain way just because it's an acceptance that things have changed. Life is definitely easier when I have a stick as people sometimes give a bit more space or a bit more forgiving if you're lurching about like I do.

I think a lot of people do this. I have a collegue with arthritis and hes never told anyone unprompted, people have asked a few times if his hand are OK (swelling flare ups) and he's just brushes it off saying he's used to it.
It depends on personality, but I think talking about how bad you feel can make it more emotionally draining for some people than just getting on with it the best you can. Just do what works for you.

For what it's worth I think most people would assume slurred speech was a medical condition such as recovering from a stroke if you otherwise presented as someone who wouldn't be drunk. I definitely would anyway (I've never heard of your condition but would assume it was something medical if you seemed otherwise fine, drunk people are usually obvious from their other behaviour.)

In my experience they don't. People have been very rude over the years. My slurring is from one side of the face being affected.