Chronic Illness, Disability and Loneliness (part 1)

Chronic Illness, Disability and Loneliness (Part 1): Introduction

Loneliness is this year’s theme for mental health awareness week. Loneliness is a widespread problem, which doesn’t just affect the elderly. Those with chronic illness or disability experience more loneliness than the general population. Chronic illness, disability and loneliness is a big topic. So, here it’s broken in two blog posts.

Part one looks at:

• chronic illness, disability and mental health
• what is loneliness?
• my own experiences
• and yours

Part two covers:

• types of loneliness
• health risks of loneliness
• how to access help

Chronic Illness, Disability and Mental Health

Disabled people experience more mental health difficulties than non-disabled people. Both anxiety and loneliness are more common for disabled people. Disabled people whose impairments affect them more severely have lower wellbeing ratings than disabled people whose impairments affect them less severely. Below is a table of average scores for both anxiety and loneliness among disabled and non-disabled people.

This table shows that 43% of disabled people experience anxiety, compared with 27% of non-disabled people. It also shows figures for ‘often or always lonely’ 13% for disabled versus 3% for non-disabled. These differences in experience are very large. Loneliness is more than 4 times more common amongst disabled people compared with non-disabled people. The data comes from the UK Office for National Statistics.

There are similar data disparities between disabled and non-disabled people for other well-being metrics, including for life feeling ‘happy’ ‘worthwhile’ and ‘satisfying.’ If you suffer from anxiety, you may find our post on 5 Top Tips for Anxiety, helpful.

What is Loneliness?

What exactly do we mean when we say ‘loneliness’? Loneliness is a feeling of lack of companionship or connectivity with others. It’s when we yearn for meaningful social interaction. In short, loneliness is having fewer social relationships than we would like, or relationships of a lower quality than we desire. Sometimes we can be surrounded by people but still experience a disconnect. So it’s possible to feel lonely in social settings.

Disabled people and those with complex chronic illness can often be isolated for health reasons. A prime example is shielding during the pandemic. Another is having less time for social interaction as time is taken up by treatments. Or, being housebound with limited ability to receive visitors. There are of course other reasons too. Those who experience loneliness and isolation can later find it harder to connect with others. Some then experience depression or social anxiety as a result. It becomes a vicious cycle.

My Experiences with Chronic Illness, Disability and Loneliness

I’ve lost most of my friends since becoming sick over 5 years ago. More recently, I spent two and a half years shielding due to covid and only go out now for medical treatment. In the last 6 months, I’ve had two (socially distanced) visits in my garden. I can only manage to spend around 60 minutes with a friend per visit (I experience so much fatigue, I need a day or two to recover). So despite having online friends (whom I value massively) I do sometimes feel lonely. It’s completely different to be in someone’s company IRL than to share an online space with them. I also can’t do groups, either online or in person. This stems from the additional energy needed to cope with the sensory overload of more than one person speaking at a time.

How to Loose Friends and Alienate People

Being chronically ill or disabled means I might need to cancel or reschedule last minute as symptoms can be unpredictable. A lot of people find that unpredictability inconvenient. Some have difficulty seeing me (their previously healthy and active friend) struggle with basics like walking, eating or memory. It’s something they don’t want to witness. Especially because my illness came on for no discernible reason/cause, meaning it could happen to anyone. No one wants a regular reminder of the fragility of their own existence. Finally, there are those who don’t find value in the friendship anymore. Perhaps they originally knew me professionally, or valued having a contact in London with a spare room. So, I’m no longer a useful person to know.

I use the word friends, but it can be anyone close. I’ve lost a partner, a sibling, colleagues who I spent the majority of my time with.

It’s very difficult to lose friends when you’re going through life-changing illness. It’s a time when you should be able to reach out for more support. Although, it can also be hard maintaining friendships when you’re often too sick to stay in regular contact. I acknowledge that there is difficulty navigating the situation on both sides; it’s not easy helplessly watching a friend suffer. But it’s so difficult not to take the losses personally. So hard to not let them affect self esteem during a time when your self esteem is already taking a battering (loss of ability, job, independence, identity etc). So the few friends I’ve managed to hang on to, I treasure them more than ever. And it’s made me reflect deeply on what it was about me, that made me seemingly so easy to abandon in the first place.

September 2023 update:

The original article ends with the following sentence:

“And it’s made me reflect deeply on what it was about me, that made me seemingly so easy to abandon in the first place.”

15 months on and I’m ready to share my reflections. Essentially, the disappearance of almost everyone from my life  isn’t actually about me. Yes I can count my remaining friends on my fingers and still have some to spare (!) but it’s not my fault, nor is it some kind of character flaw or moral failing.m The few friends that remain are saddened by my situation, but they don’t consider me any less kind, or interesting, or funny because I’ve become ill and disabled.

I read in Dr LePera’s book that when people treat you badly, it’s rarely about you. Usually it’s about them and that’s also for them to carry. So if you’re carrying hurt, betrayal, disappointment etc because of another’s actions, please put it down. That’s not your burden. It isn’t easy to do, but with time I’ve learned to let go, I have enough of my own sins to live with, without taking on other people’s.

Your Experiences

You’ll see that some people have shared their experiences in the comments. Some have written me emails and PMs. I’ve also seen so, so many similar experiences on socials: one person pointed out that it’s not just your employer who will replace you when you stop performing in the role they chose you for. Too tired for sex? Your partner will dump you. Unable to attend the fitness class? Your gym buddy has already lined up a replacement. Can’t make book club because you’re at chemo? Plenty more readers in the sea. Everyone has enough on their plate without the inconvenience of your life-changing illness. Obviously this doesn’t happen every time, there are some people whose partners love them and won’t leave them. Whose book club buddies come round regardless. But sadly, it’s not as common as we’d like to think.

Like me, a lot of people thought it was personal. It isn’t.

From the Other Side and Conclusion to Chronic Illness, Disability and Loneliness

Last week a friend of mine told me the below, which gives the other side. Locations have been changed to protect anonymity:

(My friend’s) colleague: I’ve had to take time off at short notice, I need to return to France.
Friend: Oh no, what’s happened?
Colleague: My friend has cancer, it looks like she won’t make it…
– the next day –
Friend: When are you off to France?
Colleague: Actually, I’m going to Cornwall. To be with my brother.
Friend: I’m confused, why are you visiting your brother?
Colleague: Because I need support; my friend is dying!
Friend: Your friend is dying, her need for support is greater. You can’t just abandon her.
Colleague: Yes but it’s too much for me, I don’t think I can bare it.

Obviously no one should offer support to another if it puts their own mental health into crisis. And if you do want to support someone, try to ensure there’s a network so no one person has to provide it all; share the load. Carers need care too, and respite breaks are essential!

The colleague in this real-life example is going to have to carry the guilt that she abandoned her dying friend. Is that really going to prove lighter than the weight of making the visit? People can be kind, or they can be selfish, when your circumstances become challenging, you find out the true nature of who it is you have in your life…

Do you have any experiences of loneliness? What caused the loneliness and were you able to address that? If you feel able to share, feel free to start or contribute to the conversation in the comments.

Looking for help or support? See part 2 of chronic illness, disability and loneliness.