Living with Chronic Illness: Finding Connection Beyond the Goldfish Bowl

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 moments with chronic illness, I often picture myself living in a goldfish bowl. The loneliness and isolation can intensify 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.

The Power of Storytelling

Storytelling—whether through journaling or meeting in a peer support group to play SPIKE!—helps me cope. After five years with Long COVID, I lean on people who share similar experiences. Yet, I still dread the most basic question: "How was your weekend?" UGH. Thanks for the reminder. I’m a chronic goldfish living in a bowl.

This past weekend, I managed to escape the bowl a bit. I took walks in the park, painted pots, and played tennis against the backboard. During these moments, I contemplated why isolation, even if temporary, feels so overwhelmingly difficult. How can I avoid relying on friends who don’t understand and learn to treasure those who do?

Navigating Conversations

I asked a peer I met while playing SPIKE! for advice. Her answer resonated: "Everyone asks how your weekend was because they care, not because they want to be insensitive." Be thankful for their inquiry and have an answer ready. You might say, "I am recovering." It’s brief but true. Or try, "Taking one day at a time." This is also honest.

To avoid the question, flip it around: "How was your weekend?" If you’re comfortable sharing, be straightforward: "To be honest, it was a rough weekend. I’m glad to reconnect because it was super isolating." You don’t need to dive deep into your illness. Let them know your symptoms or that your budget didn’t allow for that trip to the Cape, and you were stuck in bed. Then listen. Appreciate the conversation outside the fishbowl. Or, TBH, pretend to listen. Whatever works for you.

Embracing Connection

Just know that you will join them outside the fishbowl some days. I promise. You still know how to laugh, live, love, and care. Remember, you are not your chronic illness. You have one. It’s not fun. It’s not fair. But it’s not forever. And you are not alone.

Building a Supportive Community

Creating a supportive community is crucial for those of us living with chronic illnesses. We need spaces to share our experiences and feel understood. This is where peer support groups come into play. They offer a safe haven to express our feelings and connect with others who truly get it.

Finding the Right Group

When looking for a peer support group, consider what you need. Do you want a group focused on Long COVID, ME/CFS, or fibromyalgia? Whatever your situation, there’s a group out there for you.

Using Technology When You Have Energy

In today’s digital age, technology can bridge the gap for those who cannot meet in person. Online platforms allow us to connect with others, share our stories, and offer support. Consider joining forums or social media groups dedicated to chronic illness. These spaces can provide comfort and understanding, especially during tough times.

The Importance of Self-Care

While connecting with others is vital, taking time for yourself is essential. When a family member was concussed, we made a list of things to do while lying down. Audiobooks from Libby (the free library app) and listening to comics of shows like Seinfeld, (where nothing really happens, anyway, so there's no need to watch) topped the list.

Setting Boundaries

It’s okay to set boundaries. If certain conversations or activities drain you, it’s perfectly fine to step back. Communicate your needs to friends and family. They will likely appreciate your honesty and want to support you in a way that feels comfortable.

Celebrating Small Wins

Celebrate your small victories. Whether it’s getting out of bed, completing a task, or simply enjoying a moment of peace, recognize these achievements. They matter. Acknowledging your progress can boost your mood and motivate you to keep going.

You Are Not Alone

Living with a chronic illness can feel isolating, but remember that you are not alone. If you don't feel like talking, texting is an easy way to feel connected. On bad days, check in by text with people several times a day. Nothing long or complicated is needed. It may seem unlikely when you're stuck under a blanket with an ice pack on your head, but future days outside the fishbowl will happen. You 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. And you are not alone.