Can anyone relate to this? Don’t make you about your disability, but also, we will keep ignoring your disability and asking you to do things you’re grieving you can no longer do so you then remind people what your limitations are??!!

[Circleswego]

At least it wasn’t a ridiculously long title! Can anyone relate? I swing from wondering if I’m believed, sometimes shame (e.g. don’t want to explain that I can’t even shower daily anymore), to acknowledging it’s taken me years to come closer to accepting how limited my life is now so why should others?

It also feels like being asked why you don’t see your mum anymore and you’re repeatedly explaining to people who have known you and your mum for years, know you had a great relationship and you miss her, that your mum is dead and the next conversation explaining that your mum is still dead and the conversation after that. The next time it’s “why didn’t you have your mum over for Christmas or why couldn’t she be bothered to come?!” Whilst you’re thinking how you would still love to be able to see your mum, how much you miss her, a hint of “if you really wanted to see her, you could” creeps in, even though it’s not possible.

I don't really understand the OP.
Could you give more context please.
Who are these people and why does it matter what they think etc ?

In a nutshell, I’ve just found it extra hard lately that people I’ve explained my limitations to still don’t get/accept it.

sorry to hear about your mum OP. I’m struggling to understand how this is linked to the limitations of your disability.

from what you’re saying it sounds as if someone (or multiple people) who know both you and your mum well, are repeatedly forgetting she has sadly passed away. Is this someone with dimentia/Alzheimers, or is it various different people? If the latter that does seem strange.

on the wider point re the limitations of your disability it sounds like you’ve maybe been struggling quietly and putting on a brave face for a while so people close to you maybe don’t appreciate how limiting it is? Particularly if there has been conflicting messages ranging from you’re fine and don’t want to dwell on it/talk about it constantly. They’ve maybe accepted this at face value and are now unclear on how tough it is for you

I get what you are saying @Circleswego , sorry that others are misunderstanding.

I agree it is frustrating and I don't have anything to offer but sympathy and my personal experience that until ill health happened to me, I didn't really get it either, though I though I did.

I actually found your analagy of disability and 'death of mother' to be a really helpful way to think about it.

Best to minimise time spent with those that can't seem to get it, or just accept that is how they are. I expect they really don't mean to hurt you, they are just on the other side of the healthy/ill health divide.

Yes I get what you mean I think. Once I understood my condition I try to explain how it impacted me to family and friends. Some people got it and realized that by understanding they could accept my limitations and why I cant di certain things. Others seem to think it was me making it my whole identity or something. Which wasn't the reality is when so much of day-to-day life is impacted you kind of want people to understand why. Especially with a condition like mine where there aren't many visible clues

Hi @Circleswego I understand what you’re saying no problem. I’m in a similar situation by the sounds of it and just don’t talk about it anymore. This isn’t the similarity I alluded to, but I have a very good friend, we meet up and go out or I go to hers etc. I don’t drink and haven’t for over 3 years now, so we go out and I have soft drinks, soda water or coffee and I always drive ( often pick her up too ). Every single year for Xmas she gives me a bottle of Prosecco as part of my Xmas gift! It’s a bit like that isn’t it?

I also understand and its a good way of putting it. I dont know the answer. Most people seem to have disappeared from my life. They dont understand that that one morning I spent out the house for two hours means a week of being housebound. Or that my kids dont go out at the weekend with me because I cant take them out but then I'll be asked why I haven't done xyz with dc.
I have an ill health pension, it means Ive been independently assessed by multiple doctors and deemed unable to ever work again. So why do people that know this ask me when I'm thinking of getting a job (especially as dc are off to university in next couple of years). But seem shocked when I say when dc go off to university I'm going to have to look at getting some support in (they know my dc are registered young carers). Unfortunately its got so bad I just distance myself from everyone to protect myself.
I hope you can find that inner peace. I'm 11 years in and think its only the last 3 I've come to accept my situation. Trauma therapy helped with this.

I understand too, and I also think your analogy of a dead mother was very good.

Continuing the analogy, how do you react to the 'why didn't mum visit' people? Do you say gently that she's passed away or do you say 'Fred, you know very well she's dead! We've spoken about it many times, you know it's very hard for me, I'd love to see her, and it hurts like hell when you keep bringing it up!'

Are they largely the same subset of people doing it over and over, or is it everyone just not getting it?

Also I get the 'making it your identity' people. I assume they're the people that ask why Mum didn't come for Christmas, then when you remind them she's passed away, they react with 'she's always on about how dead her mum is!'

Who are these people to you? Family or friends or colleagues?

It's the same with depression. You tell your friends you have depression, but then they expect you to just be as you've always been and do the usual things. They're confused when you explain you can't do certain things or be around people because you're not feeling well and don't know when you'll feel better, if at all.