When My Chronic Illness Creates the Feeling of 'FOMO'

We Irish love to discuss the weather. Rain or shine, wind or hail, a conversation will generally open with some comment about the weather.

The moment the year begins to turn and the evenings begin to stay bright a little longer, the discussion of the “grand stretch” in the evening begins.

Light past 6 p.m.?

“Ah, there’s a grand stretch in the evening these days, isn’t there?”

“Grand stretch in the evening altogether.”

Ever since the clocks went forward the grand stretch has become more prominent. This has combined with some unseasonably good weather recently to send most people I know flocking outdoors. My social media is filled with pictures of scenic hikes, beach days, ice cream and groups of happy people in beer gardens, celebrating the sunshine with smiles and drinks. The joy of summer permeates everything, the spontaneity and frivolity seeping out of their Instagram posts. It’s infectious.

There is something about the sunshine that makes everything seem exciting. You want to be out in it, because you know that if you are there will be an endless possibility of adventure. Summer is the time of romances, of laughing with friends, of dancing until the sun rises and paddling in the ocean, not caring if you get wet because you’re so caught up in the moment.

I am dreading this summer.

Today is a beautiful evening. Most people I know are out soaking up the sunshine. I am in my house, looking out the window at the clear blue skies. I’m exhausted from leaving the house for a few hours this morning.

I will not be leaving it again until at least tomorrow.

My summers since I developed a chronic illness are extremely different to how they used to be.

During winter I don’t feel so bad about having to be in bed early or not being able to do much during the day. When the wind is howling outside my window and the rain is soaking anyone to the bone who is brave enough to set foot outside their door, I feel justified in curling up with a blanket and binge-watching Netflix. Wearing large, cozy jumpers and thick tights is a necessity. The fear of missing out (FOMO) doesn’t feel quite as aching then, because I can always justify staying in to myself with, “Sure it’s dark, cold, or raining.”

Spring is different. Summer is even worse. There is an energy that rises with the change in seasons. An energy that, try as I might, I can’t harness. Suddenly the weather has improved and people are making active plans.

Plans that I used to love – hikes, drinks, nights out, road trips, and adventures. I sit in my house in the evenings, trying to ignore social media and its constant reminders of everything that I cannot do. I close the brand new blackout blinds that I had to have fitted to my windows so that I could sleep against the light and curl up in bed, trying to ignore the gnawing feeling of FOMO.

Summer is a time of possibility and I feel like I have none.

I miss being spontaneous. I miss being able to just say “yes” or “no” to plans without having to worry about medication, energy levels, and food. Will I be up for it? Will I be the one holding everyone back? Will I be able to get food that fits my medical plan? While I’ve gotten used to monitoring my energy levels, to learning to live with chronic fatigue and the other side effects of my condition, to starting to manage my illness so that I can occasionally participate in the things that I would like to, it can still be a struggle.

It’s just not the same.

The longer the evenings get the lonelier I feel. I feel cut off from the life of a normal 26 year old. As the evenings get lighter the weight of my illness feels heavier. I miss being healthy. I miss being able to do things without having to weigh up the variables, the impact that it will have on my health. The warm weather makes me self-conscious, sad that I cannot wear the clothes I would like to wear because of the effect that my condition has had on my body composition. I overheat in long cardigans, jeans and tights, envious of the people walking around confidently in t-shirts, shorts and bare legs. The long months ahead seem like an ordeal to be endured and solider through, not something to enjoy.

I’m trying to focus on the positives. I may not be able to do as much as others, or stay out in the evenings, but for the few hours during the day where I can be active, the sunshine allows me to make the most of it. I can still paddle in the ocean. I can still go for walks in the woods, I just have to be careful to do it on days when my energy is good. I can see my friends during the day. Hopefully there will be a few evenings where I can push myself and stay out a bit later than usual. I will just have to accept that I’ll need a few days to recover. I am determined to make as much of the summer as I can.

It can be hard when you always feel like you’re missing out.

If I accomplish one thing this summer, it will be to stop comparing myself to what everyone else is able to do, and focus on doing as much as I am able to. I’m also trying to accept that I don’t have to feel excited about the season. I am not obliged to be thrilled about summer 24/7. There will be times where I feel frustrated and left-out because I can’t participate in everything that I would like to take part in. That’s OK. Rather than focus on the moments that I miss, I want to savor the moments that I can make. I may not be able to spend all day in the sun, but I am determined to enjoy the time that I can.

Memories are precious, and while I’m not sure how much I’ll be able to do this summer, I
can promise you that I will do everything that I can to cherish every chance I have to enjoy myself.

I hope that you’ll join me.

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