I’m Healthy With Trikafta but Stuck Inside Because of COVID-19

As some people's pandemic fears subside and businesses start to reopen in parts of the U.S., people with cystic fibrosis like me are maintaining their social distance. We still need to be extra cautious because of the threat COVID-19 poses to people with an underlying condition.

| 5 min read
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Katie Fielding
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I think we all know the feeling by now. We are scrolling social media, and we see it: A picture of friends who don't live together standing less than 6 feet apart without masks. Questions go through our head: Was this taken last year? Where do these people live?

And then you realize that they are in the alternate reality of the pandemic that people with cystic fibrosis, like me, can't experience. The world is opening, and we are feeling left behind. Self-isolating was much easier when everyone was participating, but now that businesses and the world are reopening, people with chronic illness are feeling left out. This is a familiar feeling to many of us, as we have had sickness dictate our lives before; but for many of us, we are now the healthiest we have been in years thanks to Trikafta® or transplant.

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I should be in London right now. I should be the featured speaker at an education conference in London. Before Trikafta I wouldn't have been able to commit six months out to play such a role, but no less than a month after I started Trikafta, I knew that I didn't have to worry about getting sick and having to cancel the trip, or getting sick while on a trip and not being able to fulfill my responsibilities as a presenter.

Like everyone though, my life has been flipped upside down by the pandemic. Of course, now that I can go through a day without extreme fatigue, I am like Rapunzel in her turret, only able to leave for my 5-mile morning walks. My friends see me in Zoom calls and comment about how good my color is, how healthy I seem. But they can't experience it with me. And I can't fully experience my glory because I am stuck here at home, protecting myself from the non-mask-wearing masses.

Many of us are feeling the healthiest in years, yet suddenly sucked back into that sick lifestyle as quickly as we left it.

As the world opens, we have to start doing a personal risk assessment for each activity we consider doing. This is something we are again used to and have been doing in times of sickness. “If I do this, how will I feel tomorrow,” has been a question I have talked myself through many times. But now the question is, “If I do this, will I get COVID-19?” I wonder how other people are answering these questions for themselves as they go to crowded outdoor bars or parties. It's hard to understand that people have their own risk assessment that may not align with mine. It's frustrating. 

A couple weeks ago I celebrated my 39th birthday -- my healthiest in years thanks to Trikafta. I decided that getting to-go margaritas in a park on a weekday evening, 10 feet apart with one other couple, was a risk I would be willing to make to celebrate the day. But there are other risks I am not willing to take. As a teacher, I usually spend my summers traveling, but this summer I will be staying at home. Other summer standbys like pool time are going to be possible only when I am able to secure solo pool time from family or friends who have one. (Side note: Can we make #pools4people a thing, so we can crowdsource pool time for chronically ill kids?!?)  

We have to make our own risk assessments one situation at a time. I know a lot of other people with CF desire control because CF often takes it from us.

This is a time in which we can exercise that control by deciding what exposure risk we are comfortable with. It's also a reminder of my privilege, knowing that others who also need to take precautions are not able to, as they need to work outside the home. 

This FOMO for what life could be is only going to grow as society continues to open. I have tried to find a silver lining in this intimate time that my partner and I have, but I can't help thinking about the days of hiking we were supposed to do in Scotland this summer, or even simple trips to Trader Joe's that I miss. What we imagined this modulator life to be is now delayed. 

This is a big lesson in patience and delayed gratification. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Coronavirus (COVID-19) | CFTR Modulators | Social Life and Relationships
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Katie, who lives in Alexandria, Va., is a teacher, traveler, and turophile. She is also the CF Advocacy Captain for Virginia's District 8, a facilitator for the Teen Connections program, and has worked on several BreatheCon and FamilyCon committees. You can connect with her @KatieF on Instagram and Twitter

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.