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 of chronic illness which are often overlooked – loneliness and isolation. Those symptoms can have a huge detrimental effect on us.
Chronic Illness Can Cause Loneliness and Isolation
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.
Sometimes friends drift away. That happens in life, even to people without health problems. But when you have health problems, it feels as though friends disappear because of it.
How Loneliness Has Affected Some Chronic Illness Sufferers
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.’
Loneliness and Isolation is a Huge Problem for Many People
As you can see from those statements, loneliness and isolation is a huge problems. In a world of pain or illness, people feel alone.
What Can We Do?
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 You 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. Most people will want to help you.
Very often, people who live with health issues are unable to leave their homes. Online friends are sometimes the only people they speak to.
People sometimes say that online friends aren’t real. But they are. For people with health problems, online friends might be the only people they speak to all day. They chat, get support, receive virtual hugs and share a giggle. They are most definitely real friends.
Telephone and Video Link
Keep in touch with friends and family using the phone to chat or text. And make the most of technology – use Skype, Facetime or something similar to have video chats. Seeing a friendly face can help more than just talking or texting. So grab a coffee and start chatting via a video link.
Look for a support group in the area or online, so you can chat to other people with the same problems.
Support group members will understand how you are feeling, and you will understand how they are feeling. You might find yourself giving other people support which will give you a sense of purpose again. Loneliness can often fade into the background when you start helping other people.
Go Out of the House if You Can
When 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. Spending a few minutes chatting can build up our confidence and help us to lose that feeling of isolation.
Ask People to Visit
If you’re unable to go out, perhaps you could ask people to visit instead.
Company for an hour can make such a difference. You 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 you.
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 because they care about you. And they don’t care about some dust on the mantlepiece. Always remember the saying, “Those who mind don’t matter and those who matter don’t mind.” So, ignore the dust and invite your friend round for a visit.
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 having company is better than sitting at home feeling down knowing that other people are enjoying themselves.
You might also enjoy reading: Stop Pain From Destroying Your Social Life
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.
If you can’t manage to go out, there are also good online hobby groups and classes.
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 a 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.
Loneliness and Isolation Can Cause Depression
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. Please talk to your doctor, counsellor or close friend about it.
You Are Not Alone
I know they are easy words to say, but they’re true. There is always someone, somewhere who will understand. Please always reach out.
The Campaign to End Loneliness website has some useful links.
I have recently started a Facebook group for anyone dealing with loneliness. You’ll find friendly faces and distractions every day. If you’re interested in joining, you’ll find the group here: The Virtual Village.