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FOMO - Fear of missing out.
This is something I feel constantly. That feeling people typically feel when they are stuck working late or not feeling well and don’t want to miss out on having fun or joining friends in an activity.
Now I feel this everyday all day. I sit in my house (usually my room) trying to distract myself day in day out with usual distractions. Whether that’s playing video games, body doubling on zoom or binge watching tv.
This is all to distract me from the fear I have and live with of missing out. Missing out on meeting people, experiencing new things, doing what most 22 year olds do on a Saturday night. Missing out on falling in love, making mistakes, enjoying being young.
Yes, these are neuronormative ideals that have been ingrained in us - to be like everyone else, to be normal. (And of course there is no such thing as normal). This doesn’t detract the pain I feel as I sit in bed each night on my phone watching from a distance everyone else live their lives.
I sit and dream that would be me. I get jealous. Bitter. Angry. Dark thoughts race around in my head wondering if I ever will get to experience these things, to have that sort of life - not because I want to be like everyone else but because I actually do want to experience these things.
And yet I can’t. I can’t step outside that door without feeling like I’m about to be sick. Without feeling like I need to go to the toilet. Without feeling like there’s an electrical current raging through my body causing me to shake and shake and shake. Shyness, lack of confidence, anxiety, call it what you want. Inaccessibility is what I call it. A world where the places aren’t friendly for everyone and where the people aren’t friendly to everyone.
“Be brave”, they say. “Put yourself out there”. Yes. I agree that a certain part of you does need to take the jump and it isn’t going to be nice. But when you know the consequences are more than just a bit of embarrassment or awkwardness but instead a meltdown in public, the trauma of rejection added to my rejection sensitivity, or the added regrets to my memory bank of what I didn’t do or couldn’t do whilst I was out, then it makes the jump that much harder to make.
I find it ironic and terrifying that technology and social media has made the world more connected with each other and at the same time made me feel more alone than I’ve ever felt before.
This is an unusual post from me. And if you’ve made it this far then I applaud you. I just wanted to share a bit from me. Not educational or necessarily informative but the emotions and thoughts from just one Autistic person - those that I could manage to get into words that is.
For instance, right now I want to buy something but I feel I need to see and feel it in person before I can make a decision. My problem is that the store (and most stores in general) is always so busy and so loud and so crowded. This is a huge barrier that I just can’t overcome unless I want to have a full on meltdown. I can’t simply access the store like everyone else can. I can’t get the thing I want. All because the store is not accessible for me. (And yes I can order online which I do a lot but as I said this is something I need to feel in person and the hassle of ordering and returning is just as stressful and overwhelming).
The store I’m referring to is within a large shopping centre in which they claim to be “autism friendly” and when looking at what makes them autism friendly I see some okay things such as private cinema screenings catered to Autistic people, as well as a “quiet area” for people to go to if needed. The other two options for accessibility are a nature trail outside (which isn’t accessibility, it’s telling you to just walk outside) and a general management desk (which again isn’t exactly going the extra mile to be accessible). On top of this they offer the quiet hours where they dim the lighting and turn off the music in main areas, but what is important to note is that they do this once a week for two hours…
Apparently, our accessibility is only worth two hours a week. We need to arrange our entire schedule and life to fit into those two hours just to experience the minimum accessibility. Obviously I have contacted the store and the shopping centre to point out they need to do more, whether that’s offering access to the store or centre a little bit before it opens or a little bit after it closes so we can avoid all the crowds and people, something I don’t think is asking too much, especially as it still requires us, the disabled people, to adapt our schedules to be there early or late just to feel comfortable, just to feel like everyone else, just to be able to access and have the same opportunities as everyone else. I don’t know if it’s the same everywhere else, if it’s better, if it’s worse but I’m once again reminded how something that should be so simple to do has become yet another mountain to climb whilst it isn’t even an incline for a non-Autistic person. I hope things change.
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