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!

Surely what you do is the opposite to what you thread title says??

You are doing the opposite, to your own detriment.

So... you don't often fake how bad your disability is. You sometimes push yourself beyond your own comfort levels because you are self conscious, or are covering. I hope that you raise awareness for your condition. It must be stressful and exhausting. 💐

What is myasthenia ?

confused by thread title

Essentially yes. I am not proud of doing that. But it is very hard not to.

I would say that is faking how bad it is though - albeit I am pretending it isn't bad when it is

It's a neuromuscular junction disorder.
The worse it is, the less my nerves are able to send messages to my muscles, so I feel very weak.
The more I use my muscles, the worse the signal gets and the weaker I feel

I fake that I am ok when I am struggling

This is a useful summary of the main symptoms.

In a Myasthenic crisis our diaphragm stops working and we have to be put on a ventilator

So you are faking being well ?

Exactly that.

I think you should change the title to I HIDE how bad my disability is. It gives the impression that you are pretending to be disabled, but it's the opposite!

Anyway, I do the same as you; I have fibromyalgia and scoliosis but tend to battle on even when I'm in a lot of pain. Now I have a gigantic puppy to walk and am out to prove I can do it, despite being very weak. I fight on when I should be resting, same as you do. Playing it down I suppose, wanting to be normal.

Myaware is the main charity for Myasthenia in the UK, although Muscular Dystrophy UK also provides support .

It took 20 years from onset of my symptoms until I was diagnosed and that is not at all unusual. I expect there will be people who go their whole lives undiagnosed and wondering why they struggle so much

I do it too, OP. I hate missing out on life because of my condition. Sometimes it takes days to get over over doing things though.

My da has hereditary spastic paraplegia.

The muscle weakness sort is very similar. The more he’s on his legs the more they dont function.

He use to to more extent but does still to some extent do the same. Spend a day walking about and then 3 days recovering with huge pain and fatigue. I think some of it was accepting he couldnt and some was because it’s hard to get people to id rest and that just because you “can” walk and stand doesn’t actually mean you “can” iyswim?

A friend of mine gave a great reaction when I said it was hard to explain to people - that basically his legs are like reachargable batteries.

The more use the quicker the battery drains and you need to fully recharge for full use.

He now uses a wheelchair for anything requiring standing or walking for more than 20 minutes. He still avoids some activities to prevent the need for the wheelchair but he gets his new active used chair from wheelchair services tomorrow which he’s got a frame colour of choice and so I’m hoping this will encourage him to use it more.

The title was designed to get attention. I fake the extent of my disability I guess would be more accurate

I am sorry you struggle too, I am sure we are far from the only ones. It's very tough.

I totally get that. I have a friend with ME and we both say sometimes we push through just because mentally we so badly need to join in/do the thing. But we pay the price for days afterwards

Yes that sounds very similar and that's a brilliant description.

I use an electric wheelchair if I am having a bad day, or if I know I will be out for hours (eg taking DD clothes shopping ). I feel so lucky to have it, it has made a big difference to my mental health. My neighbours are used to sometimes seeing me walking the dog on foot and sometimes in my chair.

I rarely take my chair to work though, even though I know some days that it would really help

What do you do throughout the day to make your symptoms more manageable?

I was diagnosed with myasthenia a few years ago after the birth of my first child and also hide symptoms.

Ds’ legs spasm (nearly daily) to the point 1 or both are at 60-90° and don’t go to the ground.

Im very lucky we have supportive neighbours and friends and family who just accept ds will walk in or wheel in or arrive hopping on crutches 😂

He can’t predict what’s going to happen.

Bit there definitely needs to more awareness of “ambulant wheelchair users” alongside the awareness of “hidden” disabilities.

Also more awareness around the neuromuscular conditions that are tributaries to the main known ones of CP, MD, MND and MS.

HSP often presents like CP, has a lot of similarities of MS and is a cousin to MND. Yet no one’s ever heard of it despite it being a lovely combination of 3 very well known conditions.

It’s great you’ve started this because I didn’t know much about MG (although I’ve heard of it) - I’m going to see if there’s a HSP day, week etc and start an AMA then to raise awareness.

It would be great if it’s used this way as disability still has very little understanding - especially things like people trying to hide it and recuperating for days in silence. It’s a lively antidote to the usual crap about how everyone exaggerates for a free car, parking space and the millions of £s of PIP 😉

I have badly reacted to all the forms of immune suppression so I just cope with pyridostigmine and try and plan my activity times around doses of that. I've changed job to one that is mainly home based.

I have quite bad bulbar symptoms (slurred speech/bad swallow) so I try and ensure I have big gaps between meetings and rest my voice before I try and eat.

My biggest worry is going into crisis so if I get ill I tend to make sure I do properly rest.

How about you? I know it's extra tricky managing with a young child. Do you think you had symptoms long before you were diagnosed? Have you ever had a crisis?

Don’t most of us with a chronic illness fake wellness? I never let on how bad I feel/how much pain I’m in. I slap on a smile, carry on and then pay for it later.
That’s just my daily life.

Thanks for the explanation. I’d never heard of this illness.

i have ME aka Chronic Fatigue Syndrome which is also an invisible illness. Totally different symptoms.

Totally agree re ambulant wheelchair use. I have got used to weird reactions from people if I suddenly get out of my chair.

How old is your DS?

I hadn't heard of HSP before. I just did a quick read and it sounds very tough to deal with. And yes, it's extra hard having a condition people haven't heard of and trying to figure out how to explain it to them.

And yes, I started my thread as a bit of an antidote to that kind of stuff. Hence the deliberate clickbaity title. Its a shame some of the people who jumped on the click bait title are less interested if the faking goes the other way

Different, but a lot of overlap too. My friend has ME and there are quite a few parallels. I really hope research soon finds some treatments for ME. With Myasthenia most of us are able to use pyridostigmine which helps us manage the symptoms a bit.

I was originally misdiagnosed with ME and it was many years of struggle before an optician spotted my ptosis and realised I likely had Myasthenia