Tips on coping with people not accepting/believing you’re ill

[Limboing]

If you’ve been in a position where your health change is sudden, generally a downward trend but also fluctuating, do you find that you have to remind people you’ve told of your limitations?

It sometimes feels like people think I woke up one day and decided to give up the majority of things that made my life, or I’m too busy to catch up with them, or I’m suddenly cured. As I’ve come round to accept my health issues are likely to be permanent and continue worsening, I’ve let more people know.

It feels like someone I love has died and people keep asking me to turn up to events with them. It’s really upsetting having to repeat my limitations and feels like a catch-22 - I don’t want to just talk about my illness if well enough to see/speak to people, but they assume I am back to my old capabilities when I’m well enough to see/speak to them and think I can do things that I just can’t anymore. On my best days, I still feel rubbish compared to my previous self, but can at least do some small things and it’s those days that are my life now, even though I’ll pay a price for it.

My life is run by my illness and also the mental load of trying to manage it. The repeating and reminding adds another horrid dimension/layer to this that I need to learn how to manage with the least impact. I desperately need some tips to deal with doctors that do this (straight after you’ve told them how you’re impacted) as well as people I know.

I suspect people just don't want you to feel left out or written off. I'd have a stock reply that you don't have to think about such as "thanks for the invite, you're right, it's exactly the sort of activity I would love to be well enough to do. Unfortunately that's just not possible any more". So you acknowledge that they made the effort to invite but also are firm and there's no "I've been a bit rough, I'll see how I feel" or suggestions that you may be better by then.

For doctors you just have to be really blunt and not say you're fine or muddling along. Don't put a brave face on it.

Hugs x

Since my cancer diagnosis, most people ( other than my partner and immediate family) have walked away. They don’t want to know, that this utter shite could happen to them too! All the “ let me know if I can help” bollocks. My neighbour is the worst. Running up to hug me when I saw her in the street, asking my partner how I am, offers of help; but actually we hear NOTHING from them, nothing.

You are right, the mental load is immense. I think I have one friend who gets my limitations, that’s all.

So in essence, I experience the opposite to you. However, I understand how your life may be ruled by your illness, because mine is too.

I things become a little more manageable and easier for you OP xx

If you’re feeling up to it, could you say how your neighbour could help more?

My neighbour is ill, and I have done this, “let me know if you need anything”, but I wait for them to ask/say what they need because I don’t actually know what else to do.

I sometimes drop things around. Like an extra punnet of strawberries if we went strawberry picking etc. Just a nice little
something. I say pop round for a coffee. (I don’t want to invite myself round).

I don’t want to keep asking as such because I don’t want to keep reminding them they’re ill (I know they haven’t forgotten but if they’re out enjoying something I don’t want to necessarily bring their attention back to their illness).

And I offer. And then find they’ve spent weeks not being able to open a jar, or something, and I’m like, I could have helped with that.

It could be that they really don’t want help or don’t want help from me lol which I’m fine with. But your post grabbed my attention and I wondered if I was doing enough.

Would you be happy to share what your illness is? Absolutely don't have to but there might be people here who can help.

I have lupus which is often invisible to others. I understand.