Interlude - what to say to someone with an "invisible illness"

The vestibular disorder I thought I had 99% recovered from way back in 2010 has reared its head again, for no reason I can work out, leaving me wobbly (literally) and unable to move around as much as I would like. I am seeing it as an opportunity to work with some of my persistent habits of mind, in particular self-judgement, a lack of self-compassion, and believing that I have to be perfect to be loved.

I know from having gone through this the first time round that people with invisible illnesses of all kinds, from something relatively innocuous like dizziness and balance problems, as I have, to chronic fatigue, to mental health conditions such as anxiety and depression, tend to face a certain amount of ignorance and "but you don't look sick." Many of these conditions, including mine, can be unpredictable, with good days and bad days, and no clear idea of how long recovery might take, or if it's even possible. Which might explain the vast number of "what not to say" lists. On the other side, as a friend or family member of someone struggling with an invisible illness, it's probably pretty hard to know the right thing to do or say, and you might well be scared of saying the wrong thing, not helped by the "what not to say" lists.

So here's an alternative list, inspired by and adapted from the wonderful friends and family that have taken such good care of me over the last couple of weeks.

"Don't worry about pleasing anyone else, do what's best for you. Trust yourself and your body." I only have limited energy, as my body is putting so much into trying to stay balanced. I can push beyond my limits every so often for things that are really important to me but I know I'll get the payback the next day. And it feels selfish to use that limited energy for things that matter to me but aren't really my responsibility, like going to choir rehearsals or doing "fun stuff" instead of work or cleaning the house. But at the same time, those things are what keep me sane when I spend so much of the rest of the time stuck at home feeling slightly rubbish. So it was lovely to hear my sister affirm my choices and remind me that it was okay to choose to put myself first, and not to feel guilty about it.

"When would you like me to come and see you? I'm free on X day. I'll bring groceries/food/anything you need" So many of my friends have offered to come and spend time with me, knowing that I can't get out very much. It's bloody lonely and I'm missing out on so many lovely things I could do if I were more mobile, so the fact that someone cares enough to come over and hang out with me and do little practical things to make my life easier makes me feel very deeply loved.

"What do you need me to do?" Two of my friends, who came over for dinner earlier this week, asked me very openly what practical help I needed. I don't think I'd have got up the courage to ask if they hadn't offered. But I felt cared for enough to ask them to go out for short walks with me if they had the time - I can't go very far by myself and am scared of getting stranded somewhere that's too far for me to get back if I have a dizzy spell. With someone else, I can go a bit further, and that will help my recovery in the long term. It's a tiny thing but it makes such a huge difference and makes it all feel a bit less isolating.

"It's okay that you feel .... (whatever it is)." It's amazing what has shown up emotionally - there's been a lot of fear, and a lot of guilt, and a lot of "is it my fault? Did I cause this to happen?" and a lot of loneliness and fear of isolation. I've cried more this week than I think I have for months. I'm sure that some of my friends who've been on the receiving end of that on the phone have heard some pretty crazy and irrational stuff come out of my mouth. But they've been so kind and accepting and open-hearted. Just allowing those feelings to be there, not judging or trying to explain them away, has been a wonderful gift.

"Sending you hugs." Lots of my friends are a long long way away and I know they want to help but the distance makes that impossible. So it's lovely to get little messages on social media that let me know that they're thinking of me. Being ill and living on my own means I spend a lot of time by myself, which is fine as I'm an introvert but can still get a little wearing eventually, so it's lovely to be reminded that I'm not as alone as I sometimes fear myself to be.

There's a pattern to this, I notice, as I write it - which is that the things I've appreciated have been the practical things, yes, but also those things that have made me feel loved and cared for. It doesn't matter how clumsy the expression of it might be, if there's genuine love there. Being ill sucks, but it has been a wonderful opportunity to recognise how loving, caring and generous others can be, and to feel a very deep gratitude for that.