Loneliness affects many people: people with chronic illnesses, disabled people, old people, poor people. People with ME/CFS, of course, can fit into any and all of these categories, and it’s a huge problem. The Millions Missing campaign highlights it from the other side by campaigning for more funding for the millions of people who are missing from their own lives and their friends’ and families’ lives.
I am lonely. I miss my friends every day. My ME/CFS is moderate, which means that I’m able to do my own personal care, though I don’t shower as often as I like, and I can go out of the house to do something low-key every couple of weeks. I’m not bedbound, and I’m able to use a computer and phone, to type and even to do a few light household tasks sometimes. Many people with mild ME/CFS are able to socialise on at least a semi-regular basis, and some can even work. People with severe ME/CFS, on the other hand, are frequently bedbound and housebound, perhaps unable to speak, very badly drained by social contact and often unable to use computers or other devices.
This blog post is from my own perspective; the perspective of someone with moderate ME/CFS. It’s different for everybody, but it’s always hard.
I feel lonely in many ways. Here are the worst ones.
I am lonely from watching as my friends go through rites of passage I will never experience. Me and my friends, we’re mostly in our thirties or thereabouts. Some are younger, others older, but lots of them are getting married and having children, things I will never do. I don’t want to have children, but choosing not to is different from knowing that it would be a pretty stupid thing to put your body through, not to mention caring for them afterwards.
Getting married, though. That’s something I might do if I found the right person, but it’s hard to imagine, now, how that could ever happen. I never meet anybody except online, and for me, online is not enough for a marriage. Then there’s the question of sex, which would probably have me exhausted in bed for the next week. I know that sex isn’t necessary in every relationship, but the chances of meeting someone who doesn’t care about it that much when I can barely leave the house are pretty minimal, especially since I live in a rural area with a small population. Even if I met someone and we wanted to get married or move in together, I’d basically be asking them to be my carer, which is a huge thing to ask somebody and would be a massive problem for me and perhaps for them as well. Yes, I might recover, but I can’t live assuming that I will; that is rank foolishness. So, although it’s not impossible that all these things might come together and it would happen for me, the chances are… well, pretty damn small.
And so, I see my friends getting married, and having children, and I feel lonely because I will probably never have that. It seems to me that there is nothing better than having a person to whom you are the most important and who is the most important to you, and that isn’t a possibility for me.
I feel lonely when I see my friends living their lives and knowing that I only have about a quarter of a life. I feel lonely when I read Facebook, and my friends are living their lives; going to work, looking after their kids, going running, having good times with their friends, going on holiday, gardening, visiting interesting places, joining clubs, volunteering, going to parties, popping to the shops, walking their dogs, taking care of their cats, attending protests, raising money for charity, helping their friends out, baking, sewing, knitting, creating… You get the picture. It’s not that I don’t want to see my friends doing these things; I enjoy seeing the people I love happy. It’s just that my heart hurts when I see them living their lives in a way that I can’t.
I feel lonely when I can’t be there for my friends’ big moments. I am, of course, rarely invited to parties and events because it’s obvious that I won’t be able to go to them. I’ve missed a few events now; in fact, I’m about to miss my best friend’s wedding, which is the worst of all. But there is so much involved in these events that is simply too much for me. Public transport is a huge energy drain, so I’m reliant on being driven to places when I do go. Then, if I need to stay in a hotel, there’s the fact that I’ll almost certainly need to wear my noise-cancelling headphones to get to sleep, which in turn means that I’ll sleep uncomfortably. There’s taking taxis to the event, and the event itself, which will involve things like sitting on uncomfortable chairs, talking to strangers, concentrating mentally, and walking about at least a little bit. And, finally, travelling back. Events like this realistically mean a month or more of recovery time.
The energy isn’t the only consideration, either. Currently, my only income is ESA, and they don’t give you a lot for that. Nothing like enough to live on; I’m only able to live in comfort because my Mum is generous enough to offer me a home, rent free. Even so, I give her nearly half of what I get towards the household bills, and the rest has to pay for everything else, including the extremely expensive chair I’ve just bought (and which I will be paying for for a while). Then, my computer is dying – slowly, luckily for me – and if I buy a new one which really fits my needs (including my anticipated needs, as my health is continually worsening) that will cost a lot. And a new bedside table would be helpful as my current one is very heavy and hard to move. You can imagine that with all this plus day-to-day expenses I haven’t got much left over for visiting people. Train prices continue to rise, and even cheap hotels still cost quite a lot. You have to eat while you’re away, and these days, as I’m only able to walk short distances without repercussions, I would have to take taxis for most journeys.
I feel lonely because I just don’t see people very often. My physical location doesn’t help. I live in a rural area a forty minute train journey from the nearest city, where I used to live. Until last autumn, I would occasionally do that trip to meet up with friends, but even that is too much for me now. This means that friends who want to see me have to come all the way out to where I live and, naturally, most of them are lacking some combination of time, energy, money and inclination to do that. If you’re visiting the city and want to see me, you’ve got to take most of a day out of your holiday, spend a not inconsiderable sum of money, use energy which you may or may not have, and, of course, want to see me enough to be willing to do all of these things! My Mum is very willing to have people to stay but again, the city is a much more interesting location with many more things to do, places to stay, and way better public transport. None of this is anybody’s fault, it’s just unfortunate that I live so far from anybody I know (it’s always wonderful when people are able to come out here to see me!) and it does contribute hugely to my loneliness.
The result of all this is that the vast majority of my contact with my friends is through social media. I talk with a few people through email, and with a couple by instant messaging, but for most people, it’s just looking through their posts on Facebook. Facebook is quite literally my line to the outside world and I think without it I’d have gone a little mad. I’ve lost friends since being ill; that’s inevitable. Life for most of us is a pattern of friends. You lose some and you gain others, and a select few you keep forever. The slightly frightening thing is that in my position it’s much, much harder to gain the new ones. The old ones slip away; lives change and move on and mine doesn’t or changes in different ways, and we just don’t fit together any more. People forget, and have other things to do, and that’s completely natural. But I fear that one day all of my friends will have slipped away and I will be left with only those rare lifelong ones, who are wonderful but few.
This is just one of the horrific things that ME/CFS does to a person. For many people, of course, it’s not as bad as this, and for many it’s much, much worse. These are my own experiences, my own situations and my own fears, and they may not match yours, but they are real.