What the F in FOMO Stands for When You Have Debilitating Chronic Illness

I don’t use the term “Fear Of Missing Out” because there isn’t any fear that I may miss out; I know that I’m missing out. Hence in my life, FOMO stands for the feeling of missing out.

Having chronic health problems, especially having severe myalgic encephalomyelitis, I often feel like I’m missing out. This could be missing out from not having being able to graduate from university, or feeling like I’m missing out on what I see people I know are up to from what they share on Instagram or missing out on family occasions or missing out on the life that I should be living if I hadn’t have become unwell. I’m missing out on so many things: education, employment, socializing with friends, family get-togethers, holidays, going places, and so much more.

I’ve never gotten over the Feeling Of Missing Out. It makes me feel like my ill health is winning over on me and that it’s taken so much away from me. Rather than feeling angry like some people may feel for me, I experience a sense of deep-seated sadness for the life I should be living if I hadn’t gotten ill. There are times when I’ve had to miss out on events, some of which I would have loved to be part of, but I know it wouldn’t have been possible for me to join and it would have tipped my fine balancing of energy levels and other symptoms. I have to prioritize so carefully what I can and can’t do and how much I’m able to do.

That feeling of missing out makes me feel at times invisible, as if I’m not there.

Coincidentally the international campaign on World ME Awareness Day is called the “Millions Missing” — the millions of people worldwide missing from employment, education, society, etc. due to their ME, especially those with severe and very severe ME.

I don’t think I’ll ever get over the “Feeling Of Missing Out.” I always wish I could enjoy things and equally not feel the payback and exacerbation of symptoms when I do join in with something. However, I feel like I’ve come to accept those feelings of missing out and times and events that I do want to join, even briefly, I’ve found ways to do so. I plan lots of rest beforehand, I ensure that I manage my energy, and listen to my body when it starts to tell me that it’s had enough or needs a break. And I ensure that there is plenty of time to recover after.

I’ve also come in a way to accept my limitations and that feeling of missing out. I know that I can’t do everything so instead of dwelling on what I can’t do and what I’m missing out on I look at what I can do. This has taken me some time to do and there are times still when I do feel sad about certain things I’m missing out on.

Life with chronic illnesses isn’t linear; there are times when I feel OK and times when I don’t feel OK, including that feeling of missing out. Sometimes seeing a post on Instagram or something on YouTube or hearing what a friend has been up to can be hard. Even though I’m happy for my friends, I feel like I’m missing out on things I’d love to be able to do. But this is where acceptance comes in, feeling gratitude for what I am able to do within my restrictions rather than regret over what I can’t do and what I’m missing out on.

There is this quote that I love: “There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.”

This quote helps me and reminds me that I can’t do everything; there are inevitably things that I will miss out on due to the restrictions of my illnesses and disabilities. But equally, this quote reminds me that there are many things I still can do and I try to focus on those things instead.