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Is it Possible to Still Live Boldly with Chronic Illness?

Being Bold Before I Was Sick

When I was 18, three years before I had my first migraine, I got on a plane to Madrid, Spain, to work as an au pair for a year. My job was to care for two children six days a week, working under the table for the glorious salary of a basement room and $50 weekly. But I wanted to live outside the U.S.—not just travel as a tourist—and working was more financially feasible than the cost of a semester abroad in college.

It was a bold move—the kind of boldness that was apparent to anyone who heard my story.

You're so brave, people said. So adventurous.

And I was.

Back then, cell phones were a rarity, reserved mostly for business people (and certainly not teenagers). I didn't have an email address. I couldn't pop on social media and connect with friends or a community of others seeking the same experiences.

Nope, I had a prepaid calling card. Once a week, I used the card to call my family. That was it. One call per week.

In Madrid, I was isolated, disconnected, and finding my way through a new culture and language. As a healthy 18-year-old, the experience was freeing and exhilarating.

But now? The same scenario sounds like a nightmare.

When the Realities of Chronic Illness Set In

I have so many questions for my past self. Did you have health insurance? How would you fill meds? What if you needed professional guidance about a new symptom or health issue?

That's how much chronic illness has changed my mindset and my life.

When I am making Airbnb or hotel reservations, you know what I research most? The bathroom. Because I could spend hours or days in there if I get a migraine with bad nausea. Is there enough space to lie down? Is there a window to air out the stench of vomit? Is it close to a comfy-looking bed or couch? If I get vertigo, will I be able to stumble from the bed or couch to the bathroom or kitchen without injuring myself? How far away is the nearest health care facility, and how would I get there in an emergency? And then, how would I pay for it?

My chronic illness sometimes seems like a whole other person I have to care for. I carry her with me, everywhere. Sometimes she's a couple rescue meds in my pocket, sometimes she's days spent researching and preparing for a trip others might book on a whim. Before making any plans, I have to walk through two scenarios:

  • What can I do if I feel well enough?

  • What can I do if I'm very sick?

And then, the hardest question of all: if I get sick on this adventure, will it still be worth it? Or will it turn into a nightmare that lives long after it's over in the form of credit card debt?

In that reality, living "boldly" in the traditional sense seems out of reach.

Yet people with chronic illness do it all the time. It just looks different than our friends' and families' Facebook posts.

Getting Out of Bed Is Bold—But So Is Taking Care of My Mind and Body

Earlier this year, someone described me as "fragile." I didn't know how to respond in the moment, but of course I do now.

When you're living with chronic migraines, fluctuating mobility issues, and depression, getting out of bed is bold. You grit your teeth against pain, fight to get to your feet and to the bathroom on your own. You calculate how much you can do that day and what the cost tomorrow may be. There is nothing fragile about it.

I wasn't the first person to see this in myself. A few years ago, my best friend gave me a pair of socks (photo) with a saying that encapsulates my life. To me, it means: Sure, my body may be a delicate flower, but there is power in that. There is power in me.

More recently, I've learned an even bigger lesson. While getting out of bed is an act of defiance, so is staying in bed to care for myself. I can do both and still be bold.

How the Pandemic Made the World More Accessible for Me

During the pandemic, I've been among the privileged, non-essential workers able to stay home and work remotely. I want to pause and acknowledge the level of privilege that entails. Like too many others, not all of my friends or family had the ability to isolate, and the cost has often been enormous.

But I was lucky in more ways than one.

I was used to isolating—illness often kept me hiding inside for weeks at a time, working in a dark room when I could. And for vacations, my husband and I stayed home and worked on our writing, both because writing is our passion and because travel can cause even more severe flare-ups for me

I wasn't just prepared for isolation, I thrived in it. I could control my environmental triggers. I could rest when I needed. I could manage my schedule. And, most surprising of all, I could participate even more in a writing community because everything had suddenly moved online.

For me, that meant:

  • I connected with an amazing group of Middle Grade writers who have changed my life even though we've never met in person.

  • I attended art and literary events without worrying about how late the F train would be delayed, and how many days I would lose being sick because of one night out.

  • I discovered that there is a community of people with chronic illness and disability who are talking about their experiences online. And I realized I wanted to become one of them.

As friends, family, and colleagues grew weary of staying at home, missing out on all the fun outside, I moved in the opposite direction. I didn't want to go back to my pre-pandemic life. Because even though I'd been outside my apartment among people then, I had been so much more isolated.

Discovering Yet Another Kind of Boldness

For me, living boldly with chronic illness has developed a new meaning. When the world was accessible, I had choices. Having choices is a privilege.

With chronic illness, so much of how you imagined your life is stripped away. You let go until you get to the core of yourself and discover the dreams that sustain you when your body is in rebellion.

I used to think this loss was a curse. I clung to a couple precious dreams and inched my way toward them in those slivers when I felt well and had time off work. But now I understand that even knowing which dreams I cling to in my darkest hours is something special.

I want to write.

I want to share my experiences of living with chronic illness.

I want to be part of changing how we think about disability and chronic illness.

All of this, I could do from home. But I also allowed myself the freedom to remember my18-year-old self who got on a plane to Madrid. Boldest of all, I considered which parts of that girl I still carried. I found something surprising: After over a decade of barely leaving NYC due to health, I wanted to travel and live abroad again.

It wouldn't be easy. I couldn't dash into the unknown. I was different and the experience would be different too. I would need to forge another kind of path that acknowledged the realities of my life with chronic illness. And so I did.

If you're interested in this part of my journey, please check out my other blog, A House in Sicily.

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Joanne B. Wright
Joanne B. Wright
23 juin 2022

I love this! So inspiring! 😍

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