When you live with chronic illness, friendships can be a blessing and a curse. Friends have buoyed my spirits in the darkest of times. But not every friend understands the reality of living with chronic illness.
Life with chronic illness is unpredictable. I live with chronic migraines and nerve pain. I never know when I’m going to have a flare. I can’t predict good days and bad days. I can do everything “right”—get to bed on time, get good sleep, exercise, eat whole foods—and still wake up incapacitated.
Planning can be an exercise in disappointment. If I buy concert tickets for a date six months from now, there’s a 50/50 chance I’ll be stuck home in bed. My migraines don’t care if it’s a friend’s birthday party or a baby shower or any other important or fun event.
If I ignore the pain and neurological symptoms and go out anyway, the next day will inevitably be even worse. “Pushing through” can easily double, triple, or even quadruple the length and severity of flares for me. Even if I’m not in pain at the start, the simple act of going out for an extended activity can leave me exhausted and in pain for days.
As Irene Roth shared recently, for all these reasons and more, chronic illness can be very isolating.
But during the forced isolation of the COVID-19 pandemic, I realized there was more than one way to be a good friend.
In fact, I nurtured and built some of my valuable friendships without ever leaving my little apartment.
Messaging is for more than just making plans.
At the start of the pandemic lockdowns, it seemed like everyone got on Zoom. From happy hours to casual hangouts, people hopped on Zoom for a bit of human connection. I’m not a big fan of large group Zoom calls. Looking at a screen can be hard when I have a migraine and can even reignite a migraine that is on its way out.
For me, text messaging (using text, WhatsApp, Viber, etc.) is the easiest way to reach out to friends when I need support—and to provide support to friends who need it. Texting doesn’t require looking at a screen for long. Plus, you can send personal voice or video messages.
Unlike sitting in a coffee shop, I can reply when I am able. I don’t have to “perform” wellness.
On messaging apps, I can be funny or kind or silly or frustrated. My friends can complain about an extra bad day, and I can offer comfort and compassion. I can be the kind of friend who is steadfast and reliable, a friend who shows up—even if I’m stuck in bed.
Cultivating global friendships.
The collective move to “virtual” friendships during the early days of the pandemic also inspired me to connect with old friends who had moved away and make new friends in far-flung places.
One friend I’d lost touch with had moved to New Zealand. Pre-pandemic, it seemed like an impossible distance to stay in touch. But somehow, we started chatting online while we were both shut up in our apartments. Today, some three years later, we often message each other daily! We help each other sort through priorities and set goals and create accountability. All via text and voice messaging.
I also met people through online communities and cultivated new friendships. For example, I took a course about writing articles for children run by Irene Roth. With Irene’s support, I started writing about life with chronic illness for the first time. Inspired, I joined Irene’s online writing group and mentorship program. As Irene shared her own experiences with chronic illness, we started to grow a friendship that has been an incredible source of inspiration. And we still have not met in person!
Creating focused and supportive communities.
One of the most amazing things that happened during the pandemic was that I connected with a group of writers online. At first, there were a couple dozen people in the group. But pretty quickly we winnowed down to a core set of 4-6 really active people. For two years, four of us met every Saturday and Sunday morning to talk about writing and to do writing sprints.
One of the coolest parts: none of us lived in the same time zone. We were in NYC, Tennessee, Arizona, Brazil, and Canada! Since I moved to a new time zone, it’s been hard to join every single week, though I hope to get our sessions back on my regular schedule soon.
When I was starting my consulting business, one of my writing group friends was also rethinking her career at the same time. We became business buddies, checking in weekly about what we’re trying and learning in our new careers. The best part? She’s in Brazil and I’m now in Italy and our connection is still going strong!
Feeling empowered to say no.
With chronic illness, there is always a price. When I wasn’t able to “go out with friends” for months on end, I realized just how hard going out actually is on my body. And I’m not talking about drinking. I gave up alcohol more than 15 years ago because it triggers instant migraines.
Even seemingly simple things like sitting in a restaurant or chatting after a literary reading or even having fun game night at a friend’s house—they all take their toll. For many years, I’d ignored that toll because I thought it was the price of having friendships.
As we emerged from the acute phase of the pandemic, for the first time in my life, I started to say no to social invites. Instead, I suggested other activities that were better for my body, like a phone call or an afternoon walk in the park.
Sure, with all these changes, a few of my more casual friendships fell away. But the ones that endured were the ones that mattered.
It’s so easy to fall into thinking that friendship and community only happen when we’re sitting in a room together or going to some event. But that’s not the case anymore—which is a blessing for many of us with chronic illness.
Camellia Phillips has loved writing since first grade, back in the days of graphite-stained fingers. Since then, her short fiction for children and adults has appeared in The Caterpillar, CALYX Journal, and cream city review, and her nonfiction has appeared in The Mighty, Spoonie Journal, The Chopping Blog, and La Dolce Vita Lifestyle Magazine. Her middle grade manuscript, Rat, Jack, and the Impossible Job, won Scribbler’s first-ever Manuscript Contest in 2022 and the Pacific Northwest Writers Association Literary Contest in 2021. She holds an MFA in creative writing from The New School. In 2019, she was selected as a 92Y Women inPower Fellow, a program for rising women leaders in New York City, but today she lives in a small village in Sicily with her author spouse. Camellia blogs about the reality of living and working with chronic illness—and having awesome adventures in the process—over at www.camelliawrites.com and www.ahouseinsicily.com.
Living With Chronic Illness 