The Fear Of Missing Out: My Disease Uninvited Me To Your Social Events
Group message: Anyone want to go to dinner Friday night?
Me: *Thinks about agreeing but knows I’ll be way too tired after the week*
Group message: Want to grab a drink tonight?
Me: I’m on IVs so I can’t. Feeling really worn out. Thank you for asking though!
Group message: I’m so excited for our trip this week!
Me: Have fun! I’m bummed I can’t go anymore. Send me pictures while I’m in the hospital!
CF and my social life
There’s a lot of time CF gets in the way of my social life and experiences with my friends and family. And I'm bummed about it.
Whether I feel tired, sick, or I’m so busy trying to stay alive, it doesn’t leave much time or energy to have fun with others. Unfortunately, I wouldn’t say fun is the top of my priority list. How could it be? You can’t have fun if you aren’t alive, firstly. You can’t have fun when your "spoons" go missing when functioning at a basic level.1
Do I want to go to dinner, get a drink, and enjoy the trip we planned together so long ago? Absolutely! My extroverted spirit would like nothing better. All those internet personality tests always tell me I need people to be happy. I agree because I feel how being in a group of people affects my mood. Therefore, loneliness and isolation are a chronic stitch in my side that aggravates and annoys me in the thick of sickness.
Too few spoons
“The Spoon Theory” is a common metaphor used to explain how illness and disability limits the number of “spoons”, or energy, an individual has throughout the day to complete activities.1 A healthy individual might start the day with ten spoons, while someone with CF has six. People with CF have less energy stores because of the energy it takes to fight infection and breathe.2
In addition, people living with CF have additional activities to complete such as treatments or equipment maintenance. Therefore, showering, making breakfast, doing treatments, calling the insurance company, etc. all require a spoon. Inevitably, the person with CF runs out of spoons long before the healthy individual does.
As a youngish adult, there’s a contradiction in my spoon inventory that not a lot of people my age can understand. They don’t work to stay alive in the same way and so there’s ample time waiting to be filled with social gatherings and fun memories. They don’t have to choose between fun and wellbeing at this point in their life—but we often do.
FOMO due to CF lifestyle
Over the years, FOMO, or the fear of missing out, has plagued my mental health and left a tender scar in its place. It’s painful to be reminded you should be somewhere else. Looking down and seeing yourself in some obligatory situation because you have CF is annoying. Mostly, those obligations included my body hooked to a Vest or an IV pole, resting because energy levels dropped into the negatives at the end of the day, or worried about the recovery time it took to bounce back from an event.
When I was able to join, it wasn’t so simple. I couldn’t go out for a drink with friends without first doing all my treatments and airway clearance and making sure I ate and took my evening pills. I would pack my purse with medications and diabetes supplies and usually drink a cup of coffee and take tylenol to help hold off chronic pain. Alcohol always gave me a headache and tightened up my lungs so that I struggled to breathe while everyone else casually enjoyed. After a night out, the next day I was in pain, fatigued, and needed to recover from the energy I expended.
Truthfully, it didn’t seem worth it in comparison to my friends who were already talking about the next night’s social plans and festivities. There was a huge trade-off between social events and health they never have to manage. It wasn’t that a simple disease kept me away--it was that CF caused a time, energy, and lifestyle issue so encompassing only those who have felt that strain could comprehend.
Have you experienced FOMO in your social life due to CF? How as it impacted your mental health? Share in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?