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
Rhiann
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.
CarlaK
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!
Casey
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!
Jennifer
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.
Online Friends
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.
Support Groups
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.
Pets
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.
You’ve covered such an important side to chronic illness, and the isolation we can feel can be so painful sometimes, especially when we look at what we’ve lost, the things we’ve missed out on and the friends who’ve walked away. It’s great that you’ve bigged up the online community because I totally agree that online friends are real and I hugely appreciate the lovely, amazing people I’ve ‘met’ through blogs, like yourself, and FB groups and the like. Every little we can do to remind ourselves that we’re not alone and to find enjoyment in the company of others, online and offline, is worth it. Brilliant post xx
Thank you Caz. You know, I remember back to the pre-internet days, and it was a much lonelier life, living with chronic pain. Now, we can have friends from all over the world chatting to us. It does make a difference.
I don’t have any friends, no one can be bothered with me, they all have their own little lives and quite frankly couldn’t give a toss about me. I feel I have to chase them. I would love to have friends who I could meet for coffee once a while
If you need someone to talk to, feel free to send me a message or contact me through social media. I’m always open to chat with fellow warriors. xx
Hi there, I know it gets difficult sometimes, doesn’t it? This is why I think online support groups are so good. There is normally always someone around who’ll be happy to chat. I know it’s not quite the same as going for a coffee, but you will find lots of friendly faces who really do understand. Drop by and say hello on twitter or facebook.
Thank you for your ideas. I go out to store and I strike up a conversation. It is wonderful to communicate with people I have always a great response. And I come home and it makes me feel so great. My day is always better and I hope there day is to.
Margie Paris
Really great blog. So relatable. So often I dread the thought of people visiting because the house is a mess and I have no energy to clean it! But you’re right in saying they want to see “us” not the house! It is very hard to maintain friendships, when like you say, we often have to turn down invitations. Many people do disappear, and it’s hard not to feel sad. I’m also trying to say yes to a few more things lately! I just need to make it work for me and my health! Thanks for writing this x
Hi Emma, thank you for commenting. I’m glad it meant something to you. Yes, your friends who visit, are visiting you.
This was a really amazing post. Not only did you cover some of the heartbreaking effects of chronic illness which is helpful in its reliability but you’ve also offered a plethora of suggestions and tips on how to overcome, or at least help out, these things. You are really doing a wonderful thing here with this blog and I can see from your comment section that you are touching a lot of lives. Amazing job here!
I love how you opened this vunerable subject. Great post with many tips! Another one I’d like to add is videochatting with your internet friends. Sometimes it still feels lonely talking to someone in text form. It’s nice to see a face and interact. Even if you live far apart.
Thanks again for this tip Kirsten. I added it to the post because you’re right, actually seeing and chatting to a real person rather than typing to a photo makes a difference.
It becomes really easy for anyone that is homebound a lot or doesn’t have a reason to go have adult interaction like working to start feeling forgotten. I really like your suggestion about going even if it’s only for a part of the event. That way you still get to interact with people but aren’t pushing yourself beyond your limits.
It must be so difficult when you constantly have to fight illness but fighters like you are true inspirations for many. Wish you well & pray for your strength.
It is important to talk about such things. I hope the people who need to read this find it. You’ve provided many worthwhile tips to get through the times that feel most isolating and lonely.
I have a friend with MS. I feel like there are two components to her; the one in front of others and the one when she is by herself. I honestly feel like she hides all the negative, but have no idea how to be there for her. I know she has to deal with loneliness and isolation and try my best to just be present, but sometimes I wonder if that’s enough?
A company I worked for briefly was an online support group called Healtheo360. They were set up to allow people with chronic conditions to share their stories and videos online as they found that sometimes people weren’t as willing to share their story in person. It may be something work checking out as it’s always important to talk to someone.
I can see how isolation can bring about sadness and depression. It may seem hard, but we all have to be proactive in our own happiness. I agree that people should stop saying no. That one outing could potentially change your life.
I love this beautifully written article because it is perfect. I second your suggestions as well. I am home quite a bit and sometimes even without added obstacles, it gets tiring and lonely. I find I could isolate myself from almost everyone quite easily, and I have to work on that.
Connection and communication are such important things and I think sometimes we forget that we as humans are social creatures. Loneliness and Isolation are two of the rougher emotions and most don;t take them as seriously as they should. Taking it at your own pace and trying at least two of the options you outlined I think would be great help, particularly the pets. Man pets are just so awesome! Well written and informative post!
Yes, I couldn’t agree more-those online friends are real! I think social media has gotten a bad name lately with people commenting on how addictive and “destructive” it can be for the average person who maybe spends too much time online. I think that it does have a time and place, however it’s often overlooked how therapeutic it can be for those who cannot have face to face relationships as easily. Perhaps for the extreme introvert, or as in this case a person suffering from a chronic illness.
Sometimes, we need to count our blessings. Some of us that are healthy and strong aren’t appreciative enough.
I wish you and everyone suffering chronic illness all the very best.
These are all great suggestions. It’s also a reminder for us to check in more frequently with our friends who suffer from chronic illnesses and not take their “no” answers as rejection, but as “not today.”
I can’t appreciate you enough for choosing to be an advocate and a voice for the patients suffering from chronic ailments. This will help raise awareness about the disease and the issues patients deal with. Thanks for your efforts. Hope this world would be more friendly to people with chronic and rare ailment.
A good article to raise awareness of the meaning of living life with health problems. I sense that anyone who is experiencing pain and sorrow feels emotionally detached from others. It helps to know that they aren’t and don’t have to be alone.
We live in a cruel world and seeing posts like this trying to encourage to be brave amidst this brings a lot of positivity. So many people suffer with loneliness and isolation yet the world is deaf. Very inspirational insight!
People with chronic disease and anxiety both have unique struggles, and many times those instances overlap. thanks for sharing nice tips how to deal with it
Hey, I just wanted to say I know things get difficult but please don’t think you’re on your own. I know you don’t know me but if you ever need to talk you only need to message me on social media (it’s all @theowletblog) in case you need it x
Superb post– I think it’s a good read for those who have chronic illness AND those who know someone struggling or housebound.
Pingback: Ill Health Retirement After Years of Struggling to Work – Despite Pain
Pingback: My summary of March 2019 – Rock For Disability
Pingback: What is Life Like with Chronic Pain? – Despite Pain
Pingback: There is More to Chronic Pain Than Just Pain – Despite Pain
Pingback: Pain Can Steal A Sense Of Purpose – Despite Pain
Great article – thanks for sharing this. Our nonprofit organization, the Center for Chronic Illness, offers free, professionally-facilitated support groups both in Seattle, WA, where we are based, and via the web at http://www.supportgroupscentral.com/CCI. Our goal is to bring people together living with different diagnoses in hopes of helping to decrease isolation for patients impacted by ongoing heath challenges. Check us out at http://www.thecenterforchronicillness.org and follow us on social media!
Thanks for this. I live on my own and have fibro. I don’t see people unless I go out and I can’t do that often. People complain about loneliness during lockdown. Try living with it every day. EVERY DAY.