Chronic Illness + Loneliness

6:00:00 PM

Having one, or more, chronic illness can be difficult. It's hard on your body and your mind. And while many spoonies discuss their symptoms and side effects, there is one that they tend to leave out.

Many chronic illness warriors neglect to talk about it, but chronic illnesses can often lead to feelings of isolation and/or loneliness. And although we don't talk about it regularly, many spoonies have experienced it.

Personally, there are a lot of reasons that I experience this feeling. Some of which are related to my illnesses and some of which aren't.

As some of you already know, I'm a military spouse. This means that I am often moving around the country and rarely staying any place long enough to make friends. So that already makes things difficult for me. However, my illnesses make it much worse.

There are just so many aspects of living with a chronic or invisible illness that can attribute to this feeling and unfortunately, I experience most of them. 

A lot of the fellow spoonies that I know have talked about how their diagnoses has helped them learn who their real friends are. You know, the one's that ask how you are and actually want to know the answer!

I know all too well that over time, certain people get tired of hearing us talk about our illnesses, but for many of us, it's hard not to. For me, my illness directly affects every single aspect of my life. It has taken over and it's hard not to talk about something that is so constant. It's like being in a long-term relationship and having a story of you and your partner for every conversation you have. People might get tired of hearing about your significant other, but they're a significant part of your life, just like our chronic illnesses.

One of the things that I hate the most, and a big contributor to my feelings of loneliness, is not being invited to things. I know that I often have to say no, but it's not because I didn't want to go. In most cases, I'd give anything to go see a movie with my friends or tailgate at a football game, but I just can't do it. However, that doesn't mean I don't want to be invited. I'd much rather have to decline an invitation than be excluded and not get one at all.

Declining invitations wouldn't be as bad, if I were still able to see friends at school and work functions, but for me, that's not possible. It's the same for many others too. School and work were too hard for me to physically handle, so at the ripe age of 20 I had to give them both up. Unfortunately, that meant almost all of the friends that came with them too. Because of my illnesses, I spend a majority of my time at home. I occasionally meet up with a group of military wives once or twice a month, but other than that, I really only leave the house for my doctors appointments. 

I recently read a piece on The Mighty about this subject and the author made a pretty good point:

"The other part of isolation that occurs with a chronic illness is being made to brave the medical and social system alone. For many people, when they have a doctor’s appointment for something serious or they go to the emergency room, there are people who rush to be at their side. When you have a chronic illness, people may stop caring after a while and/or can’t be bothered to make the effort."

Unfortunately, I have also experienced this. I face a majority of my doctors appointments alone as well as the tests and scans at the hospital. Of course, this isn't how I'd like it to be, but that's just how it goes. 

I understand that a majority of people pull back because they don't quite understand what we're going through, can sometimes lead us to making online friends. I know I've definitely met some wonderful people online that I've grown really close to. That might sound weird, but it's nice to have someone to talk to that actually understands what Im going through. However, this can indirectly contribute to our feelings of loneliness too.

Now don't get me wrong, I wouldn't trade my spoonie community for the world, but I do wish that my online friends could be my friends in person too. Without realizing it though, these online relationships can actually aid in our feelings of isolation. It's great that we are connecting with others, but it also means that we are spending our time at home while talking to said friends, instead of going outside. So even though we are connecting with someone, we are still physically alone.

The good news is that there's a silver lining! While we may not always want to be on our own, there are things that we can do to enjoy our alone time. Which is why I've compiled a list of activities that are perfect for filling that negative time with something positive!

Ways to enjoy spending time on your own:

  • Use this time for self exploration
  • Find peace with yoga and/or meditation
  • Watch your favorite movie or TV show
  • Dive into your favorite book
  • Create something new
  • Engage in a hobby
  • Work on a DIY project
  • Color in a coloring book
  • Snuggle up with your animals

Even though living with a chronic illness can be lonely at times, it's important that we learn to make the best of it! Of course, I haven't quite mastered this, but I'm definitely trying :)

Can you think of any other activities or pieces of advice? I'd love to see them in the comments!

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  1. I can relate to your post so much, Ivy. I love that you've found a community of online friends as well - I am so grateful for mine! I'm similar to you in that I rarely am able to leave the house. So much of my interactions come from chatting with friends here on the interwebs. Thank you for sharing your thoughts and also for the ideas of how to spend the alone time - great points! <3

    1. That means so much to me! Knowing that people can relate to these posts is exactly why I post them, especially the hard one's like this. It's definitely not fun being stuck at home, but there are ways that we can learn to enjoy it. I honestly don't know where I'd be without my spoonie friends!

  2. I found this post nearly impossible to read. Between the bar on the left covering part of the text and the pale font against the white background, I finally just gave up on it. If you ever repost this in a style and color that a nearsighted chronically ill person can read, I'd love to give it another go. I don't usually mention this kind of thing, as it's far easier to just click the "back" button, but I think this is an important topic, and I assume you wrote it to be read. So it's really a well-meant suggestion, not a criticism.

    1. Hi! I'm sorry to hear that you had trouble reading this post. Unfortunately, I've checked on all of my devices and can't seem to replicate the issue that you are having. Would you mind sending me a screenshot of what you see so I can get a better understanding of the problem? Feel free to send it to me at In addition, I'd be more than happy to email you a copy of the post, if that's something you'd be interested in :)