Chronically Ill Kat

I don’t think I ever really understood how detrimental loneliness and isolation can be, until I got ME/CFS and POTs. Being chronically ill can be an incredibly isolating and lonely experience, and it can feel as if there is nothing you can do about it; as if for as long as you are sick, you will be lonely. Of course this is not fully true, but isolation is a widespread problem for people with chronic illnesses, due to a plethora of reasons. To be fully open with you at the moment I am struggling with feeling chronically ill and isolated.

Studies have suggested that ‘feeling lonely on a regular basis can shorten your lifespan by 26%, making it deadlier than alcoholism’. Loneliness is linked to an increased risk of mental health conditions, dementia, heart disease, heart failure, strokes, etc. It breaks my heart to know that so many people who are already sick with chronic illnesses  end up being lonely and feeling isolated, and that this then leads to a negative cycle whereby their loneliness makes them sicker, making it even harder to combat the loneliness.

My experience

When I first became sick, I was fortunate to be living in university dorms and had a big network of friends and acquaintances. They were around me a lot of the time and, better still, most of them had a lot of spare time, so we spent a lot of time together, hanging out. Even at that point, I sometimes felt lonely, even when in a big group, as often I was too sick to join in with what my friends were doing. I have a very clear memory of being at a party and suddenly a song came on that everyone loved, and everyone forsook the conversation I was in and jumped up to dance. But I was too sick to join in, so I ended up having to watch the fun from the outside, feeling heavier and heavier, and very, very lonely. But luckily for me, at the beginning, these moments, whilst regular, did little to undermine the fact that I was living in a vibrant community and could still join in with many things and regularly see people.

But since becoming an adult, things have become harder. As my friends have grown up and become adults too, they’ve developed their lives in new directions, made new friends and new networks. Some of them have even moved away for good. I haven’t done any of this. My closest support network and group of friends are still my university friends. And through being sick I no longer have acquaintances. Since uni, I haven’t made too many friends either. I am too sick.

Not only do my friends have a lot of new friends, but most of them have jobs that are, if not full time, close enough to it. They do things outside their jobs, like most people, and generally lead full, interesting and busy lives. And I am so glad that they are able to do that. But I cannot do the same. Sadly, what it means for me is that I have very few friends living in the same city as I do, and they are often busy so I don’t see them all that regularly – which means I don’t see anyone. I also feel more and more the diverging life experiences of people growing up and getting on in life, and my life of being sick and able to do very little. Just to be clear, that is no one’s fault. I am really lucky to have incredibly good and supportive friends. They just happen to be busy and interesting people!!

In fact, in a typical week, I speak to about four people and my cat: my two housemates, my osteopath or physio, and one other friend. And some people get even less social contact than I do. Sometimes, when I say this to non-disabled people, they tell me that it’s much the same for them, but what I think they sometimes miss is that, whilst they might only hang out with that many friends, they probably spend all day at work socializing with people, pop into the shop for a few things, and then go to a sports class/language class/dance lesson… you name it, where they might also speak to people. Whilst it isn’t the same as hanging out with friends, it is still social interaction and does fulfil, at some level, the basic human need for social contact. If I don’t see my friends, I am literally inside my house not seeing anyone: the closest comparison I can think of is when we were in strict isolation for covid – but without the regular zoom calls and nice accessible online events we suddenly got for that short time!

The reality is that this is not enough for me, nor really for anyone but, as an extrovert, I feel my lack of social interaction very intensely. And I notice that, when I haven’t seen people for a while, my mental health plummets.

There are some obvious solutions to help tackle isolation, but many of these are not easily accessible for me. Most obviously, one solution would be to make new friends. I think any adult living in a city, sick or not, can attest to this – making new friends is actually quite hard to do. The main way that people tend to do this is by joining a club or sports team, or they go to a meet up, join a dating app, or just hang out with work colleagues. But most of these things are inaccessible to someone who has ME/CFS and rarely leaves the house – particularly now, with the risk of covid, where a lot of vulnerable people are still avoiding large social gatherings. And even if you manage to make it out, as a one off, there is no guarantee you will be able to do the same again, at the same time the following week, meaning any progress you might have made, into a social group, is lost.

The point am making here is that, when your energy has to be very carefully spent, there is not always enough excess energy to get out there and make new friends, even if that’s what you most want or need.

But all hope is not lost

As I mentioned before, it can easily feel like there is no way out of this loneliness when you are very sick – and this is something I very often feel. However, there are some things I have been able to do that, although not perfect, have helped with some of the very intense feelings of isolation. I know that I have not always felt lonely whilst being sick, which means that I won’t always feel lonely whilst being sick – even if I am now. So just very briefly, here are some of the times when I haven’t felt as lonely and the things that helped me:

• Live communally: when I lived in a house with five friends, whilst there were many challenges to such a situation, I rarely had the chance to feel isolated or devoid of social interaction. In fact, it meant I was able to meet my friends’ new friends, and the house became a bit of a social hub – so even though I was sick, my social life was thriving in a manageable way.
• Online community: many chronically ill people alleviate their isolation by finding an online community, for example through support groups, or sickstagram. That way you can find friends who share common interests or experiences, and they are always accessible through your phone.
• Gaming communities: for a while, last year, I was part of a group of people who gamed together online, and it was surprisingly (as a non-gamer) really nice. In the game, I was not sick nor different and could join in with anything and, as a group, we would navigate challenges together whilst on a voice call. It was really like being part of a team. I will add here that online gaming culture can make it difficult to find the right communities. Sadly, there is a shocking about of misogyny, homophobia, racism, ableism, you name it. But when you find the right group, it can be really nice.
• Travelling: this one is definitely not accessible to all and may not be good advice, but it works for me! I’ve found that travelling to visit friends who live abroad or elsewhere can be a really helpful refresher, as you get a lot of social contact in one go. This is definitely what keeps me going when times get really hard – but it does often lead to living in a bit of a boom-bust energy cycle.
  Similarly, even less accessible for some, I lived for a while in a beachy tourist destination and it was great, because there were a lot of people who had a lot of time so, again, I was seldom lonely because I was surrounded by people who mostly wanted to do things that I could join in with – like hang out in a beach cafe, or on the beach with a hammock, or at someone’s house jamming.

I’m sure there are many other ways to combat loneliness when you are chronically ill, so please comment underneath if you have any more suggestions that work, or have worked, for you, so that those of us who are currently struggling can remind ourselves that we too can change our situation – even if it is often really hard.

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