Silent Symptoms of Chronic Illness – Loneliness and Isolation

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.

Silent symptoms of chronic illness - loneliness and isolation

Hidden Away

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

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.’ 

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.

Ignore the dust. Those who mind, don't matter. Those who matter, don't mind.

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.

Support Groups

Getting support is important when you have a chronic illness

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.

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 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.

Pets can be a great comfort. My dog and cat. Fox red labrador with cat on his back.
My old cat and dog

Online Friends V Real Life Friends

Online friends are real friends. People with health problems, sick, disabled, chronic pain, online friends may be the only people they chat to

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.

Do you feel lonely and isolated? Please leave me a comment below and click the buttons to share this post on social media.
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I spend a lot of time online, and am always happy to say hello 😍

32 thoughts on “Silent Symptoms of Chronic Illness – Loneliness and Isolation

  1. 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

    Liked by 1 person

    1. 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.

      Liked by 1 person

  2. Lonely hearts club

    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

    Liked by 1 person

    1. 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.

      Like

  3. 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

    Liked by 1 person

      1. Lindsay Rae

        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!

        Like

  4. 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.

    Liked by 1 person

    1. 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.

      Like

  5. lforsythe7040

    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.

    Like

  6. Anna

    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.

    Like

  7. 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?

    Like

  8. Scott J DeNicola

    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.

    Like

  9. 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.

    Like

  10. erica3639

    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.

    Like

  11. 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!

    Like

  12. 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.

    Like

  13. 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.”

    Like

  14. Swagata Sen

    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.

    Like

  15. 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!

    Like

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  17. 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

    Like

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