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!

Oh it was okay as I was used to it, thank you :) His was a bit worse but hard to say as he died very young sadly. I am older than he was now. Sorry for being morbid!! I'm not a debbie downer I promise.

I'm fairly open about it. But because it is rare I find it hard because people don't instantly understand when you explain how it impacts me. And I don't want to bore them with the details.

And I feel very conscious about things like when they all want to walk to go out for lunch. I want to go, I don't want to stop them going, I don't want to draw attention to myself. I can end up feeling very stressed how to quietly manage things.

You don't need to apologise at all. I bet you miss having him to talk to now.

My granny had MND which has similarities in some of the symptoms (albeit mine is treatable /gets better with rest , whereas MND is just so devastating). I wish I could travel back in time and chat with her again. Just things like understanding a little about having slurred speech etc.

Yes you're right, I guess "masking" is a better word.

And yes, sometimes its about making others comfortable/not standing out /not wanting to be perceived as lazy.

I"m so sorry. I know MS can be really tough and again most of the battle remains hidden.

The numbness sounds really horrible and scary

The Covid jab set me back years. I was making progress and have a history of prescription drug poisoning. In fact, prescription drugs are what set off my fibromyalgia and predominantly chronic fatigue. I only got diagnosed with the former as it was easier to get this and I was too ill to go through all the tests to get a diagnosis for CFS / ME. The irony…

I often fake it and don’t show anyone until I am really poorly. I’ve regularly had to collapse on the ground when walking the dogs. My health fluctuates and I did have a relatively good period for a few months until recently. And I’ve now burned out.

Thanks for raising awareness. I have a family member with this condition. Looks like only eyes are affected at the moment though it was a physio who urged them to get support around I think aching shoulders, think also optician involvement. Wish all those with hidden disabilities support

Glad people spotted it for them.

Sometimes it it is only the eyes there's a good chance of treatment getting it into remission. And a fair chunk of people only ever have ocular myasthenia and it never develops to generalised.

Do they have bad double vision? I am lucky I don't get double vision really, but I do struggle with ptosis. When I am ill I can sometimes barely open my eyelids. Normally it is more subtle but it's why I can't fake being well to those who are very close to me because they spot my ptosis getting worse.

I do this too, you’re not alone. I have MS and 2 young children. How much do you tell them about your health? I struggle with this because I tend to be very open with them but do not want to scare or burden them. I look fine but struggle with keeping up with housework so don’t like having play dates at my house. It affects my social life too because I can be feeling very “off” seemingly randomly, but it’s not obvious to others why. Do you have good and bad days/particular triggers?

I can sympathise with being made ill by prescription drugs. My neurologist tried to treat my Myasthenia with two different types of immune suppression and each time they made me desperately ill.

It must be scary to collapse when walking the dogs.

I have been quite open with mine, they are 11 and 14 now. They understand broadly how it works and they are actually good at telling me off it they realise I am pushing through (eg if they hear my speech slur)

I agree, I struggle a bit with playdates because I can't easily get the house in shape. DH does a lot but there is a lot he doesnt notice and cleaning makes me very ill very fast. We do have a cleaner but she can only make a dent really.

Agree about socialising too, it affects my speech and also my ability to sit up. My neck is weak by the evening and I have to lie down, it feels like a cannonball on a piece of string. So I can't really go out on the evenings. It feels quite lonely.

In terms of what causes flares - rapid movement /lifting anything heavy are avoidable causes. Unavoidable causes are heat , stress (well I guess it's some times avoidable) , illness.
Grief too, when I got the phone call to say my grandma had died my whole body just stopped working. Right when I needed to be strong for my dad and it failed me. I couldn't speak or swallow. I get very scared that if my children have anaphylactic reaction the stress would cause my body to fail me right when they need me. (They both have multiple allergies)

What causes flares /bad days for you?

That wouldn't have got much views.
Going by past threads on pip etc there's a lot of hate for disabled people.

I have myasthenia too! I’ll write more tomorrow as I know you’ll get it when I say my eyes are going op 🫣

Every disabled person does this. With the amount of crap disabled people are going through right now your stupid title doesn't help

No need for that.

Sounds really tough for you OP, and others.
I think I understand a little, as am outsider, as my mum has a chronic illness and she often puts up with pain, or tries to do things, then pays for it later. It used to annoy me as a child, why she'd later on at home because saying things like I shouldn't have lifted that etc, and I'd say well why did you then, you always say that?! I didn't really understand then, though.
In mum's case I believe now that her desire to carry on is a response to her own mum's completely opposite attitude. My nan was disabled and fully embraced the sick role, including putting a lot of pressure on my mother to care for her. I think DM is desperate not to end up like her.

My "stupid title" is entirely designed to make that point. I am well aware this is not unique to me. That so many people people with chronic conditions and disabilities do this. You only have to read the first few lines of my post to realise this.

Are you serious right now. That title is completely out of order, especially on mumsnet which is full of people who hate the disabled

Totally! I need to stop too! Take care

This thread is designed to educate those people.

But not everyone will read the thread, they will just read the title like most people do with any kind of click bait

It's really interesting to hear it from the child's perspective.

Its hard trying to balance making sure I save enough of my health for them, particularly when it is so unpredictable.

When they are with their dad I mainly rest so I am ready to focus on them when they are with me.

I changed job partly because I was talking so much at work that I had no voice left for them in the evenings.

I try not to let them do any of the caring but I feel bad when I cannot care for them. Getting a wheelchair has helped a lot because it means I can carry their bags if we are on a day trip (and I am much less tired when we get home /am able to go)

Yes I am and I am disabled. I don't care about the title. Op explained it in her posts.

Well get angry at them for their prejudices, don't take it out on me

When the pip debate's were raging,I hid something like 30 odd thread's because of the bile and made up posts of I know someone that gets thousands and nothing wrong with them this encouraging more hateful posts.