35 Fun Ideas for Family Quality Time with a Chronically Ill Parent
We’ve all had this dreadful feeling: There’s this amazing concert of your favorite band and all your friends are going, but you can’t make it.
The fear of missing out, mostly known as FOMO, has become a buzz word over the past few years. Thanks to Instagram and TikTok, you get live updates of the fun your friends are having at parties and on exotic holidays, making you wish you were there too.
But there’s a big difference between this ‘social media envy FOMO’ and the fear of missing out thanks to chronic illness. Because instead of that pang of disappointment that you’re not able to be everywhere and do everything all the time, you may not be able to do anything at all. ‘Chronic illness FOMO’ is not a one-time incident, but a deeper sense of loss.
When you’re too sick to take part in social activities like summer barbecues, the annual family weekend or New Year’s Eve parties, it can be really lonely. And it’s not just because you’re missing out on so many experiences, but you feel a little left out too. Those ‘Oh you had to be there’ inside jokes can make it harder to fit in at times when you are well enough to join in on the fun.
When you’re experiencing legitimate FOMO, what can you do to cope?
I don’t have all the answers, but hopefully these tips can provide some solace.
1. Accept that FOMO sucks.
Let’s face it: You are missing out on fun and valuable life experiences, and that’s not fair. And contrary to what our positivity culture may say, you have every right to feel sad, jealous and frustrated. ‘Chronic illness FOMO’ is about so much more than having to skip one birthday – it’s about watching life pass you by.
It’s ok to admit that not being able to go out for a celebratory dinner or to the movies with your mates because your body won’t cooperate sucks, big time. If you don’t acknowledge your current reality and the painful feelings it causes, it’s much harder to do something to overcome them. Plus, suppressing negative emotions often works like a boomerang – they come back to hit you in the face.
So don’t try to fight your sadness and anger at the world by distracting yourself with ice cream, online shopping or losing yourself into gaming. You also can’t analyze, worry or deny your way out of emotional pain, just like blaming or envying healthy friends and family who do get to have a good time doesn’t help either.
Just sit with your feelings. Feel whatever it is you’re feeling. Don’t get lost in endless mental chatter, telling you, ‘Why is this happening to me? It isn’t fair.’ Instead, try to observe your disappointment or frustration as if you’re a scientist studying an object – from a distance, without labeling it ‘good’ or ‘bad nor getting attached to the emotion. Breathing slowly and gently can help you with that.
Notice where in your body you’re experiencing these emotions most intensely. You can even make a mental picture of your emotional pain – a heavy rock on your chest, a burning fire raging inside – and mentally observe how it changes as you allow these feelings to just be. You won’t always feel instantly better, but oftentimes, the intensity of your emotions lessens when you let them be.
The key thing is to not get stuck in negative thinking patterns or drown in your misery. Because then your illness takes even more away from you than it already does.
2. Learn from your FOMO feelings.
We tend to think that envy, anxiety and sorrow are bad emotions. And sure, they don’t feel pleasant at all. But ‘negative’ feelings actually serve a purpose: to protect you from harm, to point out what’s truly important to you and to motivate you to make changes.
So what could your FOMO be telling you?
Firstly, FOMO lets you know exactly what you miss the most thanks to chronic illness. Maybe you’re longing for bonding with family and friends, or some carefree fun. Perhaps you feel gutted that you can’t go to specific big events or do your favorite hobby. You may even miss activities like your old sport, theatre visits or family traditions because it allows you to fully express yourself or manage your stress levels well. Knowing your underlying needs can help you experiment with less taxing ways to fulfill them (see my point 3).
What’s more, FOMO can help you set priorities. Living with chronic illness often means you have limited energy and mobility. You probably have to manage your energy wisely. And although it’s never fun to miss out on dinner parties, carnival or watching a big game with friends, you may notice that some cancellations upset you more than others.
As much as I believe in pacing with chronic illness, some events are worth the pain and post-exertional malaise. You want to be there when your sisters gets married, your best friends has a baby shower or your partner has a milestone birthday, even if you can only attend for a short while.
Maybe it’s just me, but in my personal experience, being able to go to meaningful events, even in a modified way, makes it easier to not feel so disappointed when you have to miss out on other fun events that are less important to you. Which brings me to my next point…
3. Join in on the fun in doable ways.
Just because you’re physically unable to go on a city trip or dance the night away doesn’t mean you can’t have any fun at all. Depending on the company and the occasion, there are two options: make plans that are doable and accessible for you or join the fun in a modified way.
So you can’t go out for dinner and a movie because your pain flares up at night? Have a brunch date, organize a tea party or meet up for aperitivo with antipasti. Instead of going to the theatre, invite your friend over to watch your favorite musicals on streaming services. Play tourist in your own town rather than travel to a busy, crowded metropole far away. With a little creativity, you can find ways to make whatever you love to do more manageable.
But what if all your friends are going out for a celebration? Maybe you can come along for an hour or two, using mobility aids if necessary. It won’t the same experience as it used to be, but you can still sip mocktails, dance in your chair and catch up on the latest gossip. Although in theory this strategy beats sitting home alone with FOMO, sometimes not being able to really take part and having to go home early can make you feel lonelier than you’d imagined beforehand. So listen to your heart to discover what works for you, and which people and events are worth the pre-emptive rest and potential increase of symptoms afterwards.
But when you really have to miss out on holidays and festivities, how can you fulfill your underlying need for pleasure, social connections and self-expression in a different way?
Only you know what’s doable for you in terms of health, practical issues and specific activities in your specific living area. But here are some ideas for inspiration:
- Are you craving more excitement in life? See if you can shake things up with mini adventures like camping out in the backyard, trying a new cuisine and cracking the code of escape room puzzles.
- Have a spoonie-proof date night if you’re looking for love, connecting with your partner or getting more intimate.
- Want to bring back playfulness and laughter, even though you’re in pain? Watch stand-up comedy, release your inner kid or play hilarious board games.
- Could you use some real relaxation and pampering? Recreate that holiday feeling at home with a staycation, have a spa day at home or turn your tub time into a soothing ritual.
- You could also beat the boredom with these 30 low-energy entertaining things you can do at home alone.
None of these things are not the same as the real deal. But I think for most of us, it’s better than curling up under the covers feeling sad and alone.
4. Missing out has some silver linings too.
Ok, you’re probably wondering, ‘How on earth could there be any good from missing out on life all the time?’ And of course, FOMO from chronic illness is not the same as not being able to attend every social event on the calendar.
But during the pandemic, many people realized that there are benefits to a slower, more mindful way of living. It can be exhausting to be mentally switched on all the time and engage in socializing when you’d rather curl up on the couch with a good book. We all know how chronic stress wreaks havoc on our health.
In contrast, taking your time to listen to your body and notice and appreciate the good things around you supports a healthy body and mind. Having space for reflecting on your thoughts, beliefs and goals can strengthen your resilience to cope well with life’s challenges and inspire change.
Chronic illness often forces you to set priorities, but focusing on what truly matters to you can also enrich your life, not just take away all the fun. That heartfelt conversation with your loved ones may be more meaningful than screaming in each other’s ears in a crowded bar surrounded by drunken people. Sure, it’s not that black-and-white when you also have to miss out on important things because of chronic chillness. But as cliche as it sounds, the smallest things in life often turn out to be the biggest things.
Even FOMO from chronic illness doesn’t necessarily mean that life’s passing you by – it is possible to be content and enjoy yourself wherever you are, as the enchanting testament ‘Within These Four Walls’ from Mindfuly Evie proves. You won’t always be able to make yourself be ‘ok’ with having to stay at home, but perhaps some days you can embrace ‘JOMO’ – the joy of missing out. As amazing as it seems, not every event is worth having a health setback over.
And a final word of (practical) advice: Don’t let your sense of normal be distorted by social media. Especially if chronic illness forces you to spend a lot of time at home (alone), your social life may largely exist on social media. When you don’t get to see many people in real life, Facebook, Instagram and TV can make you think that other people are out there living there best life, while you’re stuck in bed. Remember you’re only seeing people’s highlight reels, not their internal struggles and day-to-day problems. Healthy or not, we all have to deal with heartache and loss, overwhelm and daily stress.
So don’t spend too much time on social media if it only triggers FOMO, envy and low self-esteem. It’s not worth it.
Nothing can take all the sadness of missing out on events and activities away. But hopefully these comforting words can soften your pain and help you come up with out-of-the-box ideas to still have fun whenever you can.
What helps you to do with the realistic fear of missing out because of chronic illness?
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