Lupus Trust UK

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Loneliness and chronic illness

loneliness definition

/ˈləʊnlɪnɪs/

noun

sadness because one has no friends or company.

"feelings of depression and loneliness"

Of course it’s much more complex than that, I know that people have said they feel lonely when they are married or in a relationship and each one of us suffers loneliness in a different way. Being alone also doesn’t necessarily equate to feeling lonely.

People associate loneliness with elderly people living alone, perhaps after their partner passes away but patients with a chronic illness, such as lupus, are another group that also experience loneliness, if you feel ill all the time you tend to stay at home and this can cause social isolation.

Loneliness is becoming extremely prevalent and in 2018 Tracey Crouch made a statement in the House of Commons on Loneliness Strategy. The Government's "loneliness strategy" is the first cross-Government strategy to tackle loneliness and comes after the Prime Minister confirmed all GPs in England will be able to refer patients experiencing loneliness to community activities and voluntary services by 2023.

The statement was responded to by Mr Steve Reed, on behalf of the Opposition. He claimed that "loneliness is one of the great social ills of our age, and the Government are right to put forward a strategy to tackle it."

Loneliness impacts on mental health and is a risk factor for alcoholism, drug abuse and even suicide. It has been found to be associated with an increased risk of stroke and cardiovascular disease as well as an increased incidence of high blood pressure, high cholesterol and obesity.

The only thing I liked about the pandemic was the fact everyone I know was suddenly checking on me on a regular basis, which never normally happens. Little messages would pop up on my phone and I was loving it, needless to say that’s all sadly died off now as people are getting on with their own lives again. They now seem to have forgotten that I live alone, I’m not exactly young and also have more than one chronic illness. Despite ‘looking well’ I remain at risk and although their situation may now have changed, mine hasn’t and I remain quite isolated. So an odd text would be lovely and help prevent me starting to feel lonely.

In general I’m happy in my own company (and that of my cat!) but not 100% of the time even with a chronic illness. There’s a chance I might not be able to go out but I still like to be invited to things. Obviously due to the pandemic I’ve been literally ‘avoiding things like the plague’ but hopefully I will soon be able to feel safe enough to go out and meet up with people again. I just hope the fact I’ve refused all invitations for 2 years won’t have made people stop asking me.

If I’ve said it once, I’ve said it a hundred times, check on your ‘strong’ friend/family member/colleague. They’re the ones least likely to confide or complain when they’re struggling, especially mentally, yet they’re the ones that are likely to need your support. You don’t have to do much, a quick text or a silly message/photo etc is all we need to know that someone is thinking about us and concerned about how we’re doing.

We’re often seen as people who can cope with anything and for some reason that also translates into ‘we don’t need/want people checking in with us’, I don’t know why or how, as that’s absolutely untrue. Even people that cope with most things life throws at them like to know someone cares.

Other things that can contribute to loneliness

Forgetting Birthdays. This one may sounds a really minor thing, but the truth is birthdays can be lonely for people who have an invisible or chronic illness, especially if they live alone. Sending a little gift or card can make an enormous difference. With devices like smartphones and Alexa, Siri etc, it’s not that difficult to find a way to set a reminder to remember someone’s birthday and at least send them a little message.

Ignoring us. The worst thing you can do is pretend someone doesn’t exist, it’s the ultimate insult. I can’t remember the last time a friend asked me how I was, to a degree I understand it’s partly my fault as I always pretend I’m ok. As I said above, be a bit persistent and check on ‘strong’ people, we’re the ones that, as we say in the North, ‘don’t want to be a bother’. Older people in particular will not want to ‘be a nuisance’.

Don’t assume. This is an important one. Don’t assume because I’m smiling or speak in a positive manner that all is well. Don’t assume because I am having a good day and feeling well enough to engage more with life that I’m pain free. It’s called taking advantage of having a relatively good day and trying to make the most of it while it lasts, which is often not long.

Please remember you can always drop by our Facebook page or website and either message me or talk to others here who always rally round when someone is struggling.

Angie Davidson

Links to other loneliness stories:

When Loved Ones Make You Feel Alone in Your Battle With Chronic Illness.

The Part of Chronic Illness No One Talks About

The Loneliness That Comes From Being Chronically Ill

Useful Information

Where did everyone go? Coping with the loss of friendships after diagnosis.

The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.