Who cares for the carers?

By Sylvia 

Getting ill with ME was a terrible time in my life, and one of my respites was the regular Friday trip by my partner and me to the pub across the road to meet up with friends. But while I longed to talk about how difficult life was for me then, no-one ever asked me how I was doing. Which I was quite offended by, until some ten years later when our roles were reversed, my partner was going through an acute mental health crisis, and when we got to the pub (same pub, same friends) they all waited until he’d gone to the bar or whatever then asked me, not him, how he was doing. And yet, like me, he’d have really appreciated having someone listen to how he was feeling. And as for me, I’d have loved if someone had asked how I was coping – after all, while experiencing acute anxiety and depression isn’t fun, nor is living with someone who can’t eat, can’t sleep, can’t sit still, and can only talk about themself.

How have we got this so wrong? Do we treat carers as if they were minders? Whose only job is to tend the “ill” person, not to have needs of their own? To be a hero, maybe, but not a flesh and blood person?

For the first years of my illness I was living in inner London and was involved in running a local ME support group. Thus, when researchers of various varieties were looking for ME subjects to study them often came to us. At the point where I done several such interviews, always interesting, we were contacted by someone looking to interview partners, so I volunteered mine. The interview lasted an hour and a half, and afterwards he was so happy. He said that no-one, in all the years of him caring for me, had ever asked him like that about how it was for him (not easy, presumably).

Early on, I read a very good book about coping with ME – whose author I have, predictably, forgotten. In an excellent chapter on relationships and how ME affects them, she suggested making a list of all the additional tasks, physical and emotional, that your partner now has to do, because of your illness. Take out the rubbish, shop, cook and wash up every time, listen to your despair, not go out because you’re too ill to, keep your spirits up and theirs too. Then you read through the list and ask, is this a reasonable expectation for one person? Of course the answer is no. So then you go through the list again and consider which tasks could be outsourced to someone else sometimes. Maybe friends would come round and cook? Maybe when you’re feeling particularly miserable you could phone someone else and get your flood of tears over early, rather than dumping it on your partner the minute they walk through the door home from work. Etc.

We somehow assume that if we have a partner, it’s their job to take care of us “in sickness and in health”. As we would do for them if the situation were reversed. If we could. But relationships burn out, carers burn out. Maybe the rest of the world has to be a bit more prepared to step in and help. And ask  the carer what they need, too.