‘Be Our Guest’: Canceling Get-togethers Due to Chronic Illness

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by Nicole Kohr |

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Get-togethers are relaxing, supposedly. I do not feel this way, and I blame this on my cystic fibrosis (CF) and the extent to which my mother and I had to prepare for social events when I was growing up.

There are three reasons why I decline invitations to get-togethers. One, I’m nervous that someone or something at the party will make me fall ill. Two, I’m already ill and would feel more comfortable at home. Three, I have little to no information about this party, enabling my anxiety to flourish.

“What kind of food will they serve?” I’d ask my mom. “Perhaps we should eat ahead of time. My blood sugar has been sensitive lately.”

While my RSVP to the “Be Our Guest” card usually contained the phrase, “I’ll try next time,” I have attended many gatherings.

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Making Plans Amid an Uncertain Future

If I decided to go, we’d pack snacks and every drink my body might require. Two extra pairs of clothing were housed in my bathroom bag, in case I leaked. My nebulizer and all my medications — refrigerated and room temperature — were kept in my cooler bag. And those were just the basics.

Communication is key

My husband and I go to the beach with our parents and extended family every summer. Communication plays a big role in my preparedness. Any tips regarding the place that we’re going and how long we’re staying help to ease my anxiety. “I know exactly how much bottled water, medication, and sunscreen I’ll need!” I exclaim.

I feel embarrassed when I must ask for accommodations, so I’d rather provide the accommodations myself. That way, I feel like less of a burden and can enjoy the party in comfort like everyone else. Stopping the party because “Nicole needs a place to sit” is not ideal.

On the flip side, pushing myself to attend parties has had a positive effect on my social life. Like most children, I was invited to many birthday parties. Even if I felt like I needed a tuneup — a two-week hospital stay to receive IV antibiotics to treat my CF — I would attend the parties out of what felt like a sense of obligation.

It came down to basic math. If I could make it to five parties, I’d feel less guilt when I turned down the sixth one, and I knew I’d still be included in future invitations. Some might argue I shouldn’t have felt bad turning down invitations because it involved my health. I’d argue that it’s naive to think I would still be included if I declined every party invite when I felt ill. I wouldn’t have attended any parties.

Plan B

My mom would always buy insurance with the tickets to shows. That way, we could get our money back when I inevitably fell ill. My mom and I thrived on Plan B. She always had tickets to a smaller, local production on standby, or she’d set up a simple tea party in the living room. This eased my guilt as well. Although I’m sure she was disappointed at times, I never felt at fault for plans going astray. “You can’t control it! We just have to listen to your body,” she’d say.

Like most teens, I also attended get-togethers where I did not prioritize my health. People were smoking. Nothing was clean. Everyone was coughing. Why did I attend those parties? What was my priority at the time?

Nowadays, with COVID-19 running amuck, I’ve found myself asking those very questions. I’ve found peace in canceling plans this year out of necessity. It’s a self-care technique now, not a reason for shame. My new lungs are more important than a get-together, right?

Make your own party

You know that phrase, “If you’re not invited to the table, make your own table”? The same applies to get-togethers. If I’m not comfortable attending a party, I make my own! My family and I go to outdoor events and wear our masks. We invite close friends and family over, knowing that they care for everyone’s health as much as we do. Overall, it makes get-togethers fun, not stressful.

Be Our Guest” is a popular song from Disney’s “Beauty and the Beast.” It’s also a phrase that I’ve had to find comfort in. Parties used to be exhausting, but I’ve found ways to feel comfortable without standing out as the burdensome attendee.

This holiday season, I ask anyone who will have a chronically ill person like me attending their get-togethers to do what they can to make them feel as comfortable as the other guests. I enjoy bottled drinks with no ice and a chair to relax in. I prefer a heads-up when it comes to masks, or the type of food we’ll be eating. But mostly, I’ll just enjoy being a guest! If not this time, next time.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Christina R avatar

Christina R

CF'er here too and you very aptly captured how I feel about social gatherings and the amount of preparation required for them! <3 You're not alone there.

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