Living with chronic illness of any kind is difficult. Obviously, the physical symptoms are difficult to cope with. There are often lots of emotional symptoms to deal with too, like depression, grief, guilt, stress and anxiety. But there are two other symptoms which are often overlooked – loneliness and isolation. Those symptoms can have a huge detrimental effect on us.
For many people with chronic health problems, it feels that we live in our own small world, almost hidden away from a much bigger world on the outside.
We might be physically unable to go out, due to illness, pain, disability, fatigue, anxiety or depression. Our symptoms can often be unpredictable, making it difficult to make and keep plans. Going out, or meeting and chatting to people, might even trigger symptoms. We turn down invitations, so people stop sending them.
Sometimes friends drift away. They have their lives, we have ours and they don’t match. That happens in life anyway, even to people without health problems. But when you have health problems, it feels as though that is why the friends walk.
Chronic illness sufferers explain their feelings of loneliness and isolation
I often feel like that chronic illness is like living in a prison. Symptoms imprison you to spending a large amount of time at home and by doing so often limits you to seeing a limited number of people. Your world becomes smaller and smaller, leading to loneliness and isolation.
I regularly experience feelings of isolation and loneliness. When you have to decline invitations a number of times, unfortunately people end up giving up and the invitations stop coming. Nowadays I don’t see a great number of people, usually the same faces week in and week out.
When you stop working- even temporarily – you lose a ready-made infrastructure. It doesn’t take long to feel ‘out of sight, out of mind.’ You have to make a huge effort to keep in touch or find other outlets to connect: tricky when your biggest achievement is leaving the house!
As someone diagnosed with two chronic illnesses by age 16, I’ve definitely felt challenged socially. It’s hard to be the “grandma” who needs to go to bed early or whose dietary limitations mean they can’t just grab a bite wherever. But the friends who do understand are amazing!
Having chronic, invisible, and UNPredictable illnesses make me feel isolated and shameful because I feel like no one understands me. The worst part of it? I can’t blame them because I don’t even understand myself at times.
I long for understanding and companionship – and I pride myself on my loyalty and dedication to my friends – but I realize that there are times when my illnesses prevent me from showing up for the friends I do have. It is a sad cycle that I am not sure how to break. I hoped that starting my blog would help people to understand what it is like to walk in my shoes, and maybe show others like me that they aren’t alone. As Brene Brown said in “Daring Greatly,” ‘ If we can share our story with someone who responds with empathy and understanding, shame can’t survive.’
How can we stop the loneliness and isolation?
Loneliness and isolation are horrible feelings to deal with, but you can get more help and support. Here are a few suggestions which might help :
Tell People How We Feel
Friends and family often think you are coping just fine and do not realise that you are actually feeling lonely. They won’t know if you don’t tell them.
Ask People to Visit
We might not always be able to go out, so perhaps we could ask people to visit instead.
Company for an hour can make such a difference. We might not feel like chatting, but wouldn’t it be nice to hear their news? Or perhaps they could come round for a games night or watch a movie with us.
If a friend or family member wants to visit, but the house is a mess or you’re in your pyjamas, you shouldn’t always put them off. They want to see you. They don’t care about some dust on the mantlepiece. They care about YOU.
Stop Saying No
Sometimes we do need to say no. The physical illness, whether it’s pain or sickness, stops us from going out. The fear of the illness can also stop us from going out. Perhaps it’s time to stop turning down invitations. Perhaps sometimes you could go, but under the proviso to stay for only an hour or so. It means you are out mixing with people, having fun and making memories. An hour of company is better than sitting at home feeling down knowing that other people are enjoying themselves.
Go Out and Chat to People
If you’re able to, try to get out of the house. If you smile at the neighbours and passers-by, they’ll smile back. If you start up a conversation, they’ll chat back. (Who knows, they might be lonely too) Perhaps you could try to push yourself to get out more and make small talk with people – even just going to the library or the local shop, we might see some friendly faces. Spending a few minutes chatting can build up our confidence and help us to lose that feeling of isolation.
Join a Group or Class
Clubs aimed at benefitting your health (swimming, yoga classes, meditation groups etc) can perhaps give the double benefit of helping physically and meeting people socially.
Hobby groups are also good. Art classes, writing group, book club, craft group…if you find something you enjoy doing, and do it with other people who enjoy the same thing, you can make new friends. The added bonus is that you accomplish something.
Look for a support group in the area, so you can meet up with other people with a similar condition. They’ll understand how you’re feeling and you’ll understand them
Search on Google or Facebook for your condition and you will find lots of online support groups. Some are huge, some small and more personal. Some are geared towards information, others include chit-chat and fun. They’re all different, so you’ll find one where you feel at home.
Support groups are really helpful. People will understand how you are feeling, and you will understand how they are feeling. You might find yourself giving people support which will give you a sense of purpose again. Loneliness can fade into the background when you start helping other people.
If we’re able to look after them, pets bring comfort and are great company. They say that a dog is man’s best friend, but often a pet is disabled person’s best friend. If you aren’t able to have a pet, or are unable to look after one, does a friend have a pet? Perhaps ask them to bring it along when they visit you.
Online Friends V Real Life Friends
I often hear people say they don’t know what they would do without their Twitter or Facebook friends, because they don’t have friends in real life. They feel their “real life” friends have walked away from them. They feel like nobody cares. They feel alone.
They hardly leave their houses, so those online friends are often the only people they speak to.
That is real life.
Those online friends are real.
Perhaps video chatting would also be helpful for some people. Kirsten from Graphic Organic website left a message in the comments about this, and I asked her if I could add it here because it raised such a good point. Kirsten said that sometimes it still feels lonely talking to a friend online in text form. It’s nice to see a face and interact, even if you live far apart. So perhaps grab a coffee, and start chatting via a video link.
Do You Feel Lonely in a Crowded Room?
Sometimes the problem’s not physical loneliness. Everyone’s probably familiar with the saying that you can feel lonely in a crowded room. That can happen with chronic illness. People can feel alone in the world with their problems. Totally alone. They can feel as though everyone else is happy and enjoying life. But who knows how other people are really feeling? They might be suffering too, and just hiding it well.
If you are feeling depressed because of loneliness and isolation, don’t dismiss your feelings. Talk to someone about it. Get some help from your doctor.
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