This essay is part of the Color of Long COVID series, supported by the Disability Visibility Project.
Listen to Christina Igaraividez read part of this essay on our podcast:
She came out of nowhere.
I’m certain the July skies parted and plopped down this blonde, bubbly woman onto the lounge chair of our townhouse’s pool space.
“Hi! I’m Bianca,” she said, peeping through her oversized shades.
We instantly clicked after discussing the best tea. Bianca told me she was staying with friends for a month who lived across the street. We started meeting at the pool every other day and eventually she invited me to lunch.
But she didn’t know that the pool was actually the furthest I could travel on most days.
Or that on most days, I could barely make lunch.
Or that on most days, I was in bed after our chats.
Or that on most days, I was grateful to even walk at all.
It’s difficult for me to tell people about Long COVID because it’s impossible for them to understand how someone who looks so “normal” can be so sick. Most of the time, I don’t say anything. But something about Bianca’s warmth made me feel like I could. Little did I know, meeting her would lead me to a new friend who would transform how I lived with Long COVID.
“I can’t really go out much, I have Long COVID,” I told her one day, explaining I developed it in 2022 after my first exposure to the virus. I also told her I’d been diagnosed with myalgic encephalomyelitis (ME), which forced me to stop doing activities I once did without thinking. I didn’t personally know anyone who had gone through this, either, so the experience had been incredibly frustrating and unbelievably lonely.
Her face dropped like a wilting flower.
“I’m so sorry,” she replied. “I had no idea!”
I explained that while I had made a lot of progress, I relapsed and was bedridden for the first three months of 2024. I told her how being outside with her that day about 100 steps from my bedroom, was nothing short of a miracle.
Then, she remembered something: “My cousin is still bedridden from getting COVID in 2020,” Bianca told me. “Maybe I can connect you?”
My eyes suddenly drowned in tears. This was the first time I would directly know someone with Long COVID. I felt validated and surprised. But without knowing this person at all, I also felt her despair and aggravation. I couldn’t stand to think of someone else like me going through this alone. I begged Bianca to connect us.
A week later, I got a text from an unknown number.
“Hi, it’s Erica, Bianca’s cousin,” it read. “She told me you have Long COVID, too.”
As we began texting, Erica told me that she’s been between bedbound and housebound ever since getting COVID-19 in 2020. At first, I sent long lists of supplements, stretches, and YouTube links that have helped me so far. My go-to is to fix things. But I recently realized that isn’t what people always need. I caught myself and changed the subject.
“Bianca said you’re a singer?” I asked, keeping it in the present tense.
Her enthusiasm was palpable: she shared her last music video and how she used to tour the world with her indie-folk band. And there she was on my phone, this vibrant, young woman with a pixie-like cut, playing her guitar and singing in this enchanting voice.
Then, I sent her a video of one of my Moth storytelling performances that I’d been doing since 2017. I told her about the cities I lived in and we exchanged laughs over our adventures. And for a brief moment, we lived inside the people we both used to be.
During the slivers of time that I can be around people, I do my best to be present. Even though I really want to be out and be social, I get so exhausted from pretending to be “normal” that most times, it’s just too much.
With Erica, I don’t feel depleted. I look forward to seeing her name pop up on my phone. She gives me energy. Over the following months, we became modern pen pals and texted once or twice a week. There are no expectations of when we respond to each other. Only understanding.
We talk about our favorite calming TV shows. I share videos of my dog playing, she shows me photos from outside her window: a beautiful forest with sky high pine trees. She lives on the East Coast and I’m in Los Angeles, so there is plenty to exchange.
I’ve been on Long COVID groups on Facebook and Reddit but having this one-to-one connection was different. We didn’t just talk about struggles or symptoms, we also chatted about art and comedy, family and food and the everyday minutiae that made us feel…normal.
In August, I got a text I could tell was difficult for Erica to send.
“Have you ever felt inadequate when your partner goes out with friends?” she asked me.
Yes.
It took a long time for my husband to accept that I wasn’t going to have adventures with him for some unforeseeable future. We both had to accept that trips would be cancelled, meals would be his domain, and walks together couldn’t just happen. The transition from spouse to spouse and caretaker is rough on anyone. For us it’s been the most difficult time of our marriage. And for a while, I was sure this would end it.
But fortunately, we came out of it thriving. And in this moment, I was grateful for the experience so that I could help Erica navigate her own situation.
“When they go have fun without us, it’s only helping them take care of us, because they’re taking care of themselves,” I told her.
Erica was relieved.
“Ask me anything,” I told her. “ Anytime.”
And I meant it.
By October, we were texting every day. We reminisced about our past lives before Long COVID. Or we dreamed of our futures with abandon. We exchanged learnings from our healing— ways to soothe our nervous system, boundary setting and pain relievers. Managing Long COVID is all about small, gradual steps…that may one day lead to big ones.
Managing Long COVID is all about small, gradual steps…that may one day lead to big ones.
A few weeks later, Erica shared something major.
“I got to see my nana yesterday!” she told me. “She’s 92 and I haven’t seen her in years. It was a two-hour car ride and I threw up several times, but I’m so glad I did it!”
She had prepared for three days with no appointments, no computer, radical rest; and during the trip she took breaks. It took planning and some real dedication but she made it happen.
I burst into tears reading her text. My friend who hasn’t been able to leave the house did this big thing! I wanted to shout it to the world! But the world wouldn’t get it.
And that’s okay, because every time I talk to her, it’s like we’re in our own secret place, speaking a language no one else understands. We don’t just accept each other — we celebrate each other every chance we get.
“I stood up to the nurse today!”
“I started drawing again!”
“I got through Thanksgiving!”
“In just six months, you’ve changed my life.”
But it was her who changed me.
One of the most difficult parts of navigating this disease hasn’t been the physical pain or limitations. It’s been feeling misunderstood. Our worlds went from great big adventures to small windows and fragments of life.
But through our phones, we created a sanctuary that we could visit any time. We built up each other’s confidence, hope, and motivation that transcended into the everyday real world we still lived in.
Because of this friendship, I am no longer afraid to be seen. I am no longer scared to cry at the doctor’s office. Or take breaks on walks. Or tell my family that I simply just can’t. At the end of the day, I don’t dwell on my shortcomings. I list all the ways I am cared for and care for myself.
To me, these are all signs of progress. I don’t need a step counter to tell me. I can feel it in my body. And it’s because of Erica that I now know it’s okay to just…
Be.
Because of this friendship, I am no longer afraid to be seen. … I list all the ways I am cared for and care for myself.
Christina Igaraividez is a storytelling instructor, writer, and performer based in Los Angeles, California.
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