I would hazard a guess that if I asked people about loneliness and chronic illness that many would nod their head, and say something along the lines of 'yes, absolutely' or 'I've definitely experienced that'. Even with the most supportive family and friends, there can still be a twinge of feeling like we are missing connections with others in all kinds of ways.
I wanted to write this post to let you know that it isn't just you that experiences the bind of loneliness and chronic illness, wanting to see people but not always able to due to the symptoms of your conditions. You're not alone, there are so many of us, more than perhaps you realise. There are also ways to feel more connected, which I talk about more below.
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The loneliness of being alone
Hands up if you have had to turn down an invitation due to your chronic illness symptoms? Or called a friend to say you can't meet after all?
I've definitely been there more times than I can count. I've even had to cancel medical appointments as there was no way that I could have got through the travel and the appointment, the irony not being lost on me . . .
There's a loneliness of chronic illness in physically being alone. Whether it's being home by yourself, or in your bedroom desperately willing sleep to come while dealing with a raging migraine attack as your family or housemates happily watch TV and eat dinner in another room. There's a separation that comes along with chronic illness, having to prioritise what your body needs rather than being with others. It can be really devastating, and bring on great sadness.
When that happens I try and do whatever I can to look after myself, whether it's a warm shower if my body allows, some good TV or a simple but tasty meal that I handily meal-prepped earlier and shoved in the freezer for when a high symptom inevitably came along. Self-care is a term bandied around a lot these days, but looking after yourself both physically and mentally is so important when times feel tough.
Related post: Why painsomnia isn't always only about pain
The loneliness of symptoms
I sort of think about this as the loneliness of being together yet also apart. Symptoms can definitely make me feel apart from others even when I am physically in the same room, perhaps having a coffee and a chat or even walking around the park. I know that I am having a slightly different experience because my head always hurts, my hips always hurt due to fibromyalgia and I am forever on the watch for triggers that will set my MCAS symptoms off.
It's a strange experience of being together yet slightly apart. No matter how much I explain how my chronic illness symptoms affect me there is still a divide between those who understand because they also live the chronic illness life and those who do not.
The loneliness of feeling 'stuck'
For many of us loneliness and chronic illness can also be a feeling of being 'stuck'. Stuck because we can't advance our careers as we would like to, or have to give up work altogether. Stuck because we watch our friends achieve so-called 'life goals' including getting promotions, growing a family or travelling to far-flung places we couldn't possibly afford to visit even if our bodies allowed us to do so.
That feeling of being stuck rears its head for me now and again as I scroll through my personal Instagram to see yet another celebratory drinks on an evening I was invited to but couldn't attend or another picture of a cocktail being drunk on a tropical island.
But, and it's a huge but, so-called 'life goals' are individual in my opinion. They aren't what society dictates but what you achieve for your personal circumstances. It doesn't have to be financial, job-related or involve a tropical island. It can be growing as a compassionate person, learning to take care of yourself or learning a new hobby or skill to enjoy time by yourself. All of those things are achievements, and should be celebrated in whatever way works for you.
Finding connection to help with loneliness and chronic illness
The best thing I ever did to begin to manage loneliness and chronic illness was to become active on social media. It isn't an under-statement to say that being in touch with others in the chronic illness community changed how I felt about myself and my conditions, and brought me a level of friendship and support that I am truly grateful for.
My favourite platform is my Instagram account and I am so fortunate to have got to know so many lovely, smart and funny women (and a few men!) who totally 'get it'. They are there when I have a question, want to vent or just to send silly cat videos at 2am because that's the beauty of social media - there is always someone awake somewhere in the world!
Related post: How to find a supportive community on social media
If you feel alone, or lonely then I can't recommend reaching out on social media more. It can be scary to take that first step - I spent months summoning up the courage to do my first Instagram post - but I think you will find it so helpful. You can always be anonymous if you prefer some privacy, or just read other's posts. It really is up to you how you approach social media, but the connections and care is there and is so impactful in all the right ways.
Aside from social media, there are also lots of support groups to join, whether in-person at meetings or online. And if you have a friend or family member in a similar position then let them know how you feel and team up! Send messages, silly videos or enjoy a chilled movie and some popcorn together. Little moments of being together, whether in person or via phone or video, are really special.
I'm active on Instagram, Facebook and Twitter if you would like to follow along!
Related posts
Managing multiple chronic conditions: tips for self-management and getting support
22 non-pharmacological forms of pain relief recommended by those with chronic illness
4 health professionals to consider if you live with fibromyalgia
Clothes and chronic illness: comfortable styles and symptom management
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Katie Clark says
It's an odd thing for me sometimes. I long to be connected by others, but they also stress me out. So, I want to be alone, but yet, I wish I was connected. Those are the times when my mental health is really fragile.
throughthefibrofog says
I understand that. With fibro a lot of social interaction can be really tiring can't it.
the joyous living says
great article. i am sharing this for sure. i can totally understand loneliness after being stuck home for months on end due to different illnesses and surgeries. even now i am having to stay home due to my lung disease and covid.
throughthefibrofog says
Thanks so much Joy! I think so many of us experience loneliness in different ways. Perhaps others will understand a little more since staying home due to Covid and have a bit more empathy.
Shruti Chopra says
I am so happy that I have connected with you because of this virtual world. I know we can't help each other with our physical symptoms, but being there for one another - just knowing that makes you feel supported. I love how we all have a different way of presenting the things we wish to share to the world despite thoughts and ideas being similar yet our presentation is unique to us. And there is content that is so different to one another and we have so much respect for that too. It's a really good company to be in. Thank you for being so wonderful to me Claire.
Also you mention about goals - I think that did bother me a lot (it bugs me less now), but yes there is that sense of frustration at times because you know what your potential is yet when you can't work towards it - it can pinch.
Loved the article as always - look forward to reading more such pieces from you (and the recipes of course too!)
throughthefibrofog says
I'm so happy to have connected with you too Shruti! Your support and friendship is so lovely and and it means so much to be in touch with others who have the same conditions as me (and a shared love of Selfridges, quinoa and jam!!). Thank you for being wonderful to me!
I feel the same about frustration and goals. Although saying that I think we have both set ourselves goals and fun projects to do that perhaps we wouldn't have if it were not for our conditions, so perhaps that is a silver lining to be thankful for? Thanks so much for your support, as always 🙂
Kate says
So glad you wrote this post! Living with chronic illness is so tricky, and loneliness is an area that most people don't think about.
throughthefibrofog says
Thank you! I agree, I don't think many people realise the extent of loneliness that can come along with chronic illness or health concerns.
Rachael Emma Tomlinson says
I love that I have Instagram because it's the most curated feed I have, if anything doesn't suit or triggers me I can just unfollow.
My biggest thing and always has been pre MS is I lock myself away and don't contact anyone when I am passed myself.
throughthefibrofog says
I find the same, we can share what we wish to. I think having the possibility of connection is so positive for so many of us.
Nikki Michelle Albert says
I get that feeling of being 'stuck' often when I want to progress or do more and know that I cannot. But yeas social media certainly does help with loneliness because we can find people that understand our experience in ways others just cannot and interact with them when we can and on our terms.
throughthefibrofog says
I think that's the beauty of social media isn't it, that we can do it in our own time and when we feel able to do so with people who understand why we may not answer a message or get back to them quickly.