If you have an illness or condition that needs lots of rest and recovery after basic activities, do those outside of your household remotely understand that?

[Stillslowmo]

I have long covid. I used to be able to get the kids ready for nursery, shower, commute to work, grab something from the shop on the way home if needed, pick kids up/work late depending upon who was doing pick-up. I know what can be fitted around a normal day even when things are tiring or hectic.
I now can’t even shower daily, can’t work, can’t pop to a shop. Everything has to be planned and paced. I don’t expect them to get quite how limited life is now, the mum guilt etc, but I would like to not keep repeating my limitations to people or them to assume that I can suddenly recover to do what they want when they want. I find this a really hard aspect of becoming disabled. I technically am always free, but in practice rarely free to do even the day to day basics. How do others manage this and the perception of others (including those that claim to specialise in this area)?

I think a lot of people carry an idea of illness as a short term temporary thing that you have a predictable steady recovery from. Anything outside of that is then hard to get their head around. It compounded because most people won't experience a life limiting long term condition and a significant amount of people can't understand something they haven't experienced themselves.

Wondering what the last bit means/do you mean you feel that doctors and health staff dent understand?

No they don’t. I have the odd friend with their own chronic illness who understands my situation, my parents are brilliant as are DH and DS but that’s it.

Also because I have the audacity to wear fashionable clothes and be relatively slim I can’t possibly be ill according to my in laws 🙄if only wearing a nice summer dress cured autoimmune diseases and joint disorders! In all honesty I wear dresses because they are more comfortable with the frequent bloating and I’m slimmish because I can’t face food half the time or throw up due to migraines

I don't think people have the ability to understand, unless they are affected by a limiting long term condition.

I have one that gives me good days and bad days. That makes it very difficult for people to grasp my limitations. Especially if I am all happy and up for it in the afternoon and then insist on going to bed at 8pm because I am aching and exhausted from the activity... and then I might be fine next day or not.

People only ever see me either on my better days or when I’m full of painkillers and smiling through the pain I still have. They don’t see me unable to walk or yelling/crying in pain the day(s) after they see me. My family understand (and closest members have obviously seen me on some of these days) and while my closest friends know and have seen me on some worse days I don’t think they fully know how bad it can be for me as I tend to not talk about it very much now.

No. Even the ones within don't fully understand.

My youngest finally understood the fatigue side (not the pain side), when she had pneumonia and she couldn't even get to the bathroom without support, nevermind have a shower. She still can't comprehend how I've managed to cope for thirty years with it.

You're right, they can probably understand the concept but if you look OK and can physically move it suddenly becomes a lack of willpower, resilience or similar.

I have Asd and it's similar. I have a mental limit on what I can do, if I try to push through I become unable to speak or think properly. My limit is really quite high and only family have seen me hit it so friends and colleagues don't understand when I turn down an activity or meeting if I'm actually free.

I don't tell people. 99% of people don't know the reality of my life. If I agree to do something with them they have no clue of the repercussions of that. This is why i get so pissed of when people say comments like my neighbour or cousin gets pip and their is nothing wrong with them because people genuinely have no idea. The majority of people would probably think im playing the system if they knew because I save my energy and put an act on for others which means I have nothing left for me including basic care. People will never understand unless they live it.

My family (DH and DCs) understand my limitations, they’ve seen me struggle and become more limited over the last 8 years with ME/CFS.
My parents don’t really get it, they’ve seen think I should be able to do at least as much as they can as they’re pensioners.
A few people at church who’ve seen me crash and leave events have some understanding of my limits, and I’ve recently got better at stating my needs confidently rather than struggling through to save face.
It is hard for people to understand fluctuating chronic illness as healthy people can just overdo things with nothing more than a bit of aching and tiredness the next day.
Fatigue is a different level, and hard to imagine. The best way I’ve described it is “have you ever had the flu or a really bad fever? Everything hurts and you can’t think properly, you just need to sleep or rest until it’s over. Now imagine that, but it never ends. Those are my good days. I can feel like that and still be outside and smiling. Imagine how bad my bad days must be, the ones I can’t cover with a smile or look presentable through.”

You have my sympathies I am 5 years into long covid but can work now. It's still a constant energy juggling and I still pace.

For me it depends some friends did understand but also because they knew I was very active and also had another very active friend also get it.
Others not so much but mainly because there is the expectation that you get sick then you get better. Trying to understand the development of long term health conditions is difficult.

I do push myself occasionally but will weigh up if it's worth the PEM crash later.

I find stating unfortunately its not linear between time and improvement its a constant fluctuating thing.
But I also worked out small triggers so screens (would listen to the radio instead) focus on reading etc all big energy drains. It's a slow a steady kind of thing and knowing when to pull back is important.

I found intermittent fasting and increasing salt intake helps too (also developed pots which is pretty common for LC suffers).
I built up very slowly over time to increase my baseline as well.

I don’t think people really want to understand because then they’d have to care.

People don’t tend to understand, I get lots of ‘hope you get better soon’ 30 years after my diagnosis! They mean well but they can’t seem to get their heads around it.

I think people don't understand the difference between being tired and fatigue.

Ive sufferers from insomnia since my teens. My friends know I function normally on little sleep.
However I was diagnosed with cancer in February and the fatigue is at another level.
I've tried to describe it as being like someone has taken my batteries out or unplugged me at the mains.
I got so fed up with an otherwise fabulous friend who kept telling me to try and get a good night's sleep, I sent her the Macmillan fact sheet on fatigue. I think she finally gets it!

Not in the slightest! To be fair, I don’t think those in my household understand it either.

No one really understands fatigue unless they have experienced it. On bad days I feel like I might actually be dying. Autoimmune disease here. On good days I seem 'normal'.

I have chronic sequelea to a critical illness. I mainly don't explain it any more. It's been ten years now. I just say no.

I'm not free. I'm not available, sorry. Can't do that, oh well. Perhaps another time. That sort of thing. I also leave events without saying goodbye.

Mainly people accept this, and it's much easier than entering into a futile negotiation which just makes everyone feel cross. From time to time, people get really upset with me for not doing something. I have learned that in most cases, even in this case it's better not to explain. It's actually fine for people to be cross with me if they need to be. It's better than us both being cross. There's not really a scenario where nobody is cross, which was my naive hope years ago.

I have a very understandable, knowable condition that everyone accepts is real, so you'd think it would be easier to get people to understand the consequences, but no, it isn't. Humans just find this particular imaginative insight quite hard, I think. I get it because I struggle to remember or empathise with my past or future self in this state! And that's literally me! It doesn't matter really if other people agree or understand, it does nothing for the situation I am nevertheless in. So I just get on with it.

I have reorganised my work situation so it's very bursty and on my schedule, so that's workable now too. I have had unlimited PTO in my last two contracts. I negotiated this in the first role and ported it to the next. I have aggressively reorganised my life to optimise my ability to do things, basically. Focus on the practical changes you can make.