Life in a Goldfish Bowl: What Chronic Illness and Isolation Feel Like

Long weekends alone with a chronic illness can leave you feeling like you're living in a goldfish bowl, someone in a peer support group once told me when they pulled this card from the SPIKE! deck. SO TRUE.

At my worst chronic illness moments, I picture myself living in a goldfish bowl. The feeling of loneliness and isolation often happens during transitions and holidays. My friends from peer support groups reassure me: Just text another goldfish! We're here for you! It's true. I should. I will. Storytelling—either writing in a journal or meeting in a peer support group to play SPIKE!, helps. After five years with Long COVID, I lean in to people who have similar experiences. I still dread the most basic question: How was your long weekend? UGH. Thanks for reminding me. I'm a chronic goldfish living in a bowl.

This weekend, I got out of the bowl a bit. Between walks in the park, painting pots and playing a tennis against the backboard, I contemplated why isolation, even temporary, feels so shamefully difficult. How can I avoid counting on friends who don't get it and learn to treasure the ones who do?

I asked a peer I met playing SPIKE! Her answer: Everyone wants to ask how your weekend was because they care, not because super-isolated-you thinks they are being insensitive. Be thankful they ask and have an answer ready. She suggested I might say: I am recovering. (Brief but true). Or: Taking one day at a time. This is also no lie. You can also skip the answer and ask: How was your weekend? If you're not an avoider, tell it like it is: To be honest, it was a rough weekend. I’m glad to be back in touch with people today because it was super isolating. No super heavy discussion of your illness. You're just letting them know your symptoms or your bank account wouldn't allow for that trip to the Cape and you were stuck in bed. Then listen. Be thankful for conversation outside the fishbowl. Or pretend to listen. Whatever works.

Just know that you will be joining them some days outside the fishbowl. I promise. And you do still know how to laugh, live, love and care. You are not a chronic illness. You have one. It’s not fun. It’s not fair. It's not forever. And you are not alone.