By Sylvia Rose

It’s a familiar trope these days: old people are lonely, people with disabilities are lonely, loneliness isn’t good for you, lonely people die quicker than non-lonely people, how could we do more to support people who are lonely? Lunch clubs? Even a pet is better than nothing?

Maybe it would help to start with, how do elderly and disabled people become lonely in the first place? It’s not just an inevitability. These are, very often, people who used to have lives, have families, friends, hobbies. How did they lose them?

Well, partly just through ageing. My grandmother was 101 when she died. At her funeral service there were none of her contemporaries, they’d all passed on decades before. On one side of the aisle were her family, on the other were a number of local Quakers who’d known her, visited her, been kind to her for several decades. But they’d only ever known her as an old person, a recipient of their kindness, not as someone with a full and rounded life, an equal.

She was of course lucky that in being a Quaker, when she moved across the country aged 70 to live with her son and his family, she tapped into a ready-made faith community who welcomed and appreciated her, even when she reached a level of functioning that meant she took more than she gave back. Can we say this, that the sick and the very old take rather than give? It’s an obvious truth, that when our cognitive powers are limited due to physical frailty, we become absorbed in our own experience, lost inside our own heads, less able to see another’s needs as well.

It’s one of the things that most scares me about having ME, and particularly these last few years when it’s been so much worse. I’ve become more selfish, though not on purpose. I watch myself talking only about myself, forgetting to ask about my friends’ own lives, solipsistic and needy. I forget to say thank you for things. It’s only later, when I go over the conversation in my head that I see how blinkered my brain functioning is, how I can only see the path straight ahead and don’t notice the peripheral communications until afterwards, when it’s too late. It’s like my brain is so short of juice that it can only think one thought at a time, and that thought  usually centres around me, unfortunately.

We all have a need to communicate our thoughts, major or minor. To tell of our doings of the day, to feel part of the turning world. Even if it’s only on Facebook, which despite its manifest faults is a true godsend to those of us who are largely housebound. And when most days you’re not well enough for phone calls, let alone going out, when the opportunity for communication does come along I can get like the proverbial child in a sweet shop – babbling, greedy, self-absorbed. In my head, I’m going this isn’t the real me. The real me is interested in others’ lives, a good conversationalist, sensitive, caring. Sometimes I try to say this, that I hope people still remember who the real me is, that I don’t choose to be as I am now. But the longer I go on like this, the more I fear that the current me becomes the only one that others remember.

Curiously, it was easier when I was going through cancer. It’s something that people are genuinely interested in – what’s the current state of play, what will be happening next. (Will I die?) It’s hard to make ME sound interesting, though I do my best.

Do people get lonely because they’ve become boring? Because talking to them is more of a chore than a pleasure? That we do it because of who they used to be rather than who they are now? Or do ill people also forget how not to be boring, how to make the effort to make a relationship more reciprocal? I’ve seen that happen, too.

Friendships, even with family members, change over time. You bond over shared experiences, you drift apart when your life paths take you in different directions. You meet new people, find new communities. (My mother, in her 70s, strongly resisted the idea of attending a day care facility. But when she did she found, with surprise, that as everyone else was much the same age as her, they all remembered the war and had great fun reminiscing about how things used to be. These were probably not people she’d have found much in common with had they all met when younger and more active).

But growing new friendships to replace old ones, joining new activities, even in the days of social media, these things tend to require a physical presence. Bumping into people in town, falling into conversations at events, meeting for coffee, all require a level of physical fitness, of basic mobility. And well people don’t always see that ill people don’t have these options. If people haven’t seen me around at events they’re more likely (I  fear) to think I’m not very interested, not as committed as I was, rather than that I’m lying in bed wishing I could be there with them but too ill.

I am of course very lucky and grateful to have some excellent and longstanding friends, some very thoughtful and patient family, some groups I feel very much a part of whether I’m there in the flesh or not. A Pagan community I’m welcomed at when I can make it, and missed when I can’t. But these are the fruits of past activities when I was more well. I wouldn’t want to be starting from scratch now, and  I fear the inevitable attrition that comes with the passing of time. I count my blessings, but I don’t count on them. I do my best to stay interesting.

If research indicates that lonely people die sooner than non-lonely people, this is only a correlation and not a causation. Maybe loneliness kills you, but maybe to some extent (and I’m not trying to judge anyone here) the ones who die earlier are the ones who’ve lost some spirit of living, of staying vital and engaged even against the odds. Maybe there are unwritten arts to doing frailty and neediness well.