If I were to describe an average day to you, about 75 percent of it would be spent in my beloved robotbed.
Before you get any weird ideas, it’s important to know that my bed is my domain. I (try to) sleep there, I work there, I socialize there, I read there, I binge-watch there, and I roll around, frustratedly, wishing I were anywhere else.
At 28, I should be out. I should be working, socializing, partying, shopping, exploring new places, and seeing new things. I should be travelling the world, dancing ’til dawn, seeing amazing art, and making the most of living in an amazing city like London.
And while I do on occasion get to do those things (minus, of course, the dancing ’til dawn), it often requires military precision in order to do it safely, with my weeks planned around a single “fun” activity.
It’s not the easiest thing to cope with, and as a result I spent years battling the FOMO demon.
Never heard of FOMO? You may not know the term, but I’m pretty sure you’ll know the feeling. It’s one of those terribly millennial phrases that means “fear of missing out.” And when you’ve got a chronic illness that confines you to your bed most of the time, that feeling can be near impossible to avoid.
I’ve always said that I’m incredibly lucky that I was born when I was. If it weren’t for the internet, I’d have had next to no chance at a career, a social life, or constant entertainment to keep me occupied during those never-ending rest days.
But with all the benefits the internet has brought to my life, one of the biggest drawbacks is that it also shows me the life I’m missing out on.
For all the new connections and opportunities to stay in touch with friends the internet has given me, there are just as many vacation photos, work promotions, and amazing dinners in my feeds to reinforce just how distant my life experience is from the majority of my peers.
If I’m honest, I get the biggest sense of FOMO from feelings of unfulfilled potential and my desperate desire to be able to “work” in a normal way. This, I think, is one of the most difficult things for someone with a chronic illness.
It’s hard enough to avoid these feelings within my social circle, but with social media I’m now able to see what people I studied with, people I met at a summer course, and people I know even tangentially are doing in their careers.
When you’re stuck in bed struggling to figure out how you can translate your goals into the real world, it all feels very unfair. “What do you do?” is pretty much a standard question at any gathering. “Professional rester” doesn’t quite cut the mustard, especially when you’re extremely ambitious and motivated, and the only thing standing in your way is the lack of flexible jobs that you can do safely.
I’m able to work under very strict conditions: from my bed, flexibly, and part time. I came up with these rules as a result of years of trial and error, when trying to work in a normal, or modified normal, way would knock me out for months at a time.
Everyone deals with their chronic illnesses in a different way, but as I’ve gotten older, I’ve learned to accept, adapt, and adjust to the realities of my body and my life (up to a certain extent!) so that I can find ways to make the most of every day, no matter what.
What’s worked for me may not be right for you, but hopefully these tips will point you in the right direction.
Before you can start battling FOMO, it’s really important to go through the grieving process. It sounds incredibly simplistic, but until we take the time to process (in whatever way is right for us) and recognize that the way we live our lives may have changed forever, we’ll never get past the overwhelming (and totally valid) grief and anger that can come with a life-limiting chronic illness.
It took me the best part of 18 years to stop fighting my body and accept it for what it is. But once I did, I was able to stop constantly pushing myself into a flare.
Don’t think of it as giving up. It’s about learning what your unique body can handle in order to make the best adjustments possible that will help you to do the things you want.
2. What’s worth a flare?
This lesson took me a really long time to learn, but there’s very little that is truly worth a very long, very distressing flare.
The thing is, any activity for me is generally pushing my body too far. After a lot of trial and error, though, I now know what my boundaries are. I know that I can’t go out more than once a week (twice if I’m lucky). I know how much activity that outing can entail, and what the kickback is likely to be.
If there’s a spectacular event, like a foreign trip, a conference, a new job, or a wedding that I just can’t miss, I’ll plan everything around that. Boring? Of course. But by making sure I’m resting before, setting up ways to minimize physical trauma during, and resting after, I’m actually able to participate in things that are important to me.
3. Be creative
I may not be able to do a lot of things in the “traditional” way, but it doesn’t mean I don’t want to have fun. Here are some of the ways I make adjustments:
- Instead of going out, my friends come over to my place. We cook dinner together, and sometimes I even enlist the help of my boyfriend or my parents to lend a hand. If I need to, I disappear for 20 minutes and go to bed to recharge before rejoining the party.
- When I’m feeling a bit low, I have a friend come over and we watch Netflix and wear face masks in bed. Sometimes we even dress up to the nines, just for fun.
- Looking to learn a new skill or invest in a hobby? In-person classes and workshops aren’t always an option, but the web is full of great (and often free) resources. I once had to leave a coding class because I wasn’t well enough (standard for me), but I was able to find the materials online.
- I use a wheelchair in busy places. You can get them for free at every airport, and many museums and exhibitions. This keeps me safe in the crowd and saves a lot of my energy so I can enjoy a whole day out.
The people who have a problem and refuse to understand? They’re not worth your time.
4. Create, create, create
Oddly enough, my biggest achievements have all come about as a result of being sick. Whenever I had to drop out of grad school (a total of three times), leave a job (a total of… well, innumerable times), or was stuck in bed barely able to function, I’d allow a little time to feel sorry for myself, and then I’d just start doing something to occupy my time.
That’s the beauty of the internet — with a Wi-Fi connection and dedication, the possibilities are endless. From my robotbed I started an international youth journalism project that won me a trip to India to meet Richard Branson, an internationally recognized Libyan youth project, and a blog and Instagram account that ultimately led to me becoming a writer. I did all of it from home, because I wasn’t able to do anything else.
Each project started out as a small blog to keep my mind busy during a difficult time, and things just blossomed. These projects turned into something that counted as work experience.
There is no one-size-fits-all tip for working and building a career with chronic illness, because we all have such different needs. But if you can create space for yourself and find a focus that’s outside of your health and how you’re feeling, you’ll be surprised what can add up in that time.
5. Cut down on social
I’ve found that no matter how good I am at managing my health and making adjustments, I’m still going to be reminded of my limitations.
Social media can make this feeling a hundred times worse. I often find myself mindlessly scrolling while I’m bored in bed, and during that time I’m confronted with hundreds of images of people my own age doing all the things I wish I could do.
We create our realities on social media, and it’s important to remember that what we see is often incredibly filtered. Even though I knew this, seeing those images was subconsciously affecting how I viewed my own body and worth.
Recently, I started curating all of my social channels. I got rid of people who I wasn’t truly friends with on Facebook, started following accounts on Instagram that made me feel good, made me learn something, or were just gorgeous photographs, and got rid of any pseudo-inspirational stuff that clogged up my feeds and made me feel bad. The funny thing is, even my “healthy” friends are realizing that they need to do this more and more as they get older.
I’m not going to say that FOMO is never going to be a part of your life. For those of us with health conditions that limit what we can do, it’s almost inevitable. But by learning to accept yourself as you are and refocusing your priorities (both in terms of your health and the things you truly love doing), you can navigate this difficult situation.
Prioritize what’s right for you, spend time with the people you love, and find ways to make the adjustments you can. Before long, you may even realize that the things you think you’re missing out on aren’t always that great after all.
NPS-US-NP-00305 MAY 2018