FOMO, chronic illness and social media

You’ve probably all heard of the term ‘FOMO’:

“FOMO, short for "Fear Of Missing Out," is the anxiety or apprehension felt when someone worries about being excluded from or missing out on a rewarding social experience. It's often linked to the constant exposure to social media and the perception that others are having more fun or living better lives.”

However for me FOMO isn’t the Fear but the Feeling Of Missing Out because I literally am missing out. I don’t have the capability to go off and try out and join in and engage and experience what I fear I might be missing out on. Sometimes I feel trapped by my disabilities so seeing people on social media, especially those with the same physical disabilities as mine, seeing posts of this people doing what I saw as ‘really awesome things’, things that I’d love to be doing brought on those serious Feelings Of Missing Out.

FOMO, disability, social media and me

I used to follow a lot of disability content creators especially on Instagram and YouTube because I wanted to follow people like me who I could relate to as they had the same or similar disabilities as me. I just wanted to find young chronically ill and/or disabled people like me as I wanted to find a community where I felt like I belong. Having chronic health problems and disabilities I feel very isolated and I don’t know anyone in person with disabilities too hence why I turned to the online. It was also in some ways supportive especially when I first became ill and then received the names to the illnesses I have.

However I often felt feelings of FOMO when I’d go on social media but I didn’t really recognise the impact it was having on me. I’d see young disabled people with the same illness as me or other disabilities and I felt connected and I could relate to what they were posting about and it helped me in some ways especially early on when I first became unwell. 

However on the flip side especially on Instagram I’d see people’s posts of them on holiday or going on days out or dancing or modelling and doing what I saw as other ‘really awesome stuff’. I’d think to myself ‘I have M.E. and/or EDS too why can’t I do that?!’ or ‘I’d love to travel to the US to do the dance Rollettes too’, or ‘I’d love to go on a day out like’, ‘I wish I could do an opportunity like that’, or ‘I wish I was well enough for an assistance dog’, and so on and so on. Or I’d see posts where people would be filming more of their lives and I wish I could build up my confidence to film more of my life too. Or I’d see them on days out and I’d wish I had the ability to do that too but in my reality my health restricts me to not being able to travel that far away. I could keep going on and on but these are just a few examples of how social media affected me and brought me feelings of FOMO.

I’d also watch a lot of wheelchair ballet and dance content because I missed that from my pre-M.E. life and I loved this particular content creator and she’s done some really fantastic dance opportunities plus modelling which looked so amazing to do. 

My old pointe shoes

I did try an online 1:1 dance session in my wheelchair but it just proved too much for my body. I think ballet is part of my pre-illness life now. Who knows, maybe when my body is in a better place wheelchair dance or ballet could be part of my new life? Maybe I could start by doing some Progressive Ballet Technique to ease me in, but let’s just take things one day at a time.

I realised after a while the effect social media was having on my mental wellbeing. As a result I took a step back from social media because I find the FOMO so unsetting, frustrating and overwhelming. I wasn’t jealous I just felt frustrated because of the limitations put upon me by my disabilities and also because of the lack of opportunities to do things locally. For example where I live there’s no opportunity to do wheelchair sports or dance and we’re not close to any cities and the things living somewhere bigger offers like museums, art galleries, expo events etc. and we don’t have any National Trust or many similar places nearby or places where say I could hire an off-road mobility scooter and go rambling in the outdoors. Me as a person I love to be active and I love the outdoors and I love visiting new places (when it’s quiet and not busy).

I’m now had a sort out over who I follow, especially on Instagram. I now don’t follow the accounts that bring on feelings of FOMO, or if I find something too much but I still want to follow them I might restrict them so their posts don’t pop up on my feed. I also find I spend less time on social media too; I can even go days without going on the apps.

I also have to remind myself that social media posts are just a small snapshot, a highlight of someone’s life. You don’t see what is going on before or after that photo or video was taken and shared, just like people don’t see the bigger snapshot around my posts. That disabled content creator might have a milder form of M.E. than me and therefore is able to do more. As well they might still really struggle with payback after doing that day out they’ve posted a film of. They might still be in pain while they’re filming or they’ve saved up all their energy to film that post. Or especially with influencers they probably have paid to help them do their content. We just show what we want to show on social media. You don’t know what goes on behind the scenes.

People might even feel FOMO about me wishing they had a Batec too or a wheelchair like mine, who knows?! 

I think what is also important to do and I was reminded of this today is when I see a post that might make me feel ‘megh’ is to actually be happy for that person. Happy that they enjoy the freedom of dance too, or happy that they a really enjoyable day out or holiday or happy for them that they enjoyed going to see a musical or seeing friends. These people are showing these snapshots and moments of their life on their social media because it’s meaningful to them and they want to capture that moment as it’s special to them and they want to share it (unless they’re being paid to the post obviously).

I’m now selective over what I post and I only like to post the positive things. Sometimes I wish I could post more of the reality of my life like I see other people do but I haven’t had the confidence to do that yet and I don’t want to delve into the toxicity of chronic illness on social media (which is a post for another day).

I also have my personal social media for myself. Snapshots of my life I want to share with people but more importantly a timeline for myself to look back upon. Reminders of special memories, moments I want to hold onto or a catalog of things I made and things like a timeline of home and garden and what I’m doing and changing as time goes on.