Ask the Advocates: COVID-19

We asked our advocates on Cystic-Fibrosis.com to share their perspectives on the COVID-19 pandemic, and how their lives have been impacted so far.

Life has changed in some ways and stayed the same in others. Some were able to find silver linings, some were able to work from home, some experienced tension with family and friends, and there was a general feeling that the world was now experiencing what CF patients are already accustomed to.

Masks, frequent hand washing, social distancing, and clinical trials quickly became part of everyone's life. Read below to find out what our advocates had to say about COVID's impact on their lives.

Response from Katelyn

Before COVID happened, I was very sick and was very limited with what I was able to do. Even before the pandemic, I was wearing masks everywhere because my lungs were filled with so much infection that we were afraid one new bacteria or fungus would impact me greatly. I also stopped hugging people or shaking hands well before the virus because I was so conscious of germs.

The biggest way COVID impacted my life was the inability to see family. While I may have had to stop going out due to the progression of the disease, I was still seeing family during those years of illness. When COVID came into play, my husband and I did not see our families for over a year even though we lived very close to each other. It was just too risky.

Response from Janeil

COVID has been a testing time for many families--ours included. As a family, we still wear masks in public, do not attend large indoor gatherings, and take extra precaution with our son’s preschool situation. Not only have we reduced the activities we feel comfortable doing but we have had to make some difficult decisions as far as the people we can see.

The saddest part has been the tension in some personal relationships where our ideas about COVID differ to the point that it’s unsafe for me to be around them. It’s hard. COVID is hard when you’re a high risk individual with small children who are unvaccinated.

Response from Kenny

COVID has been a wake up call for everyone across the globe when it comes to staying vigilant about one’s health and protecting themselves from dangerous illness, but that was something already ingrained in my psyche when the pandemic came along. As someone who was planning travel to China for work, I was well-aware of what was happening before it reached the United States, which, combined with having CF, might have made me a bit more cautious early on. Even so, I had to change my normal flu season habits.

I was wearing surgical gloves in order to remind myself how often I needed to wash my hands, as a great deal was still unknown about how it was transmitted early. I was lucky enough to work for a company that allowed me to start working from home when infections were getting to the point where I was uncomfortable, and started that about a week before lockdowns began. To further protect myself and remain insulated, everything we could buy, including groceries, was done online and ordered for contactless delivery.

It was a scary time, and my paranoia was high in regards to how easily I could catch COVID and how it might affect me if I did catch it, so there was very little interaction with friends or family for the better part of two years.

The silver lining was that I had all the time in the world at home to plan my day around my breathing treatments and staying healthy. I’ve been able to keep up with more treatments than ever and continue my preventative maintenance, in addition to getting the vaccine as time progressed. As much as CF can make me appreciate a healthy day, COVID has made me appreciate how special time spent socially with friends and family is. That new perspective is something I hope to carry forward as things continue to improve.

Response from Cheriz

While the Covid-19 pandemic has made leaving my home and managing CF more difficult, my CF has prepared me for this pandemic in many ways. I’m used to wearing a mask, I’m mindful of germs, and I have learned to be flexible while navigating life with CF. I’m fortunate to work at home, however, as a foster parent I have appointments often outside the home.

We do the best we can. We are vaccinated, we wear masks outside the home, and we sanitize frequently. All of my family and friends do the same. The hardest part is not seeing friends for over 18 months, but they understand. No matter how long it takes to be reunited in-person with my friends, I know that nothing will change our friendship. I am truly thankful for my family and friends’ support.

Response from Nicole

COVID has had such a tremendous impact on everyone, not just me. For once in my life, it seemed that others were now experiencing some of which I live with day in and day out. Having CF puts me on high alert of germs - I always have to be careful, keep my distance and constantly wash and disinfect my hands to limit the spread of germs. With COVID, everyone has been encouraged to be more careful; to keep their distance and disinfect regularly. All things I have had to do my whole life.

COVID has had an impact with how and when I interact with family and friends. I was initially terrified of COVID and the unknown. My immediate family and I literally sheltered in place, did not leave our home nor saw anyone. The fear was crippling but as we learned more, and now especially with the vaccines, I have gotten a bit more comfortable with starting to resume some normal interactions. COVID has not disappeared, though, so the fear still sits in the back of my head every single day.

The silver lining of having CF is I already was practicing good hygiene and infection control; COVID just reinforced the importance.

Response from Meagan

Since the start of the pandemic, Margo has not had a bad cold or cough. I believe the masks she and her classmates wear are a big factor in that. Masks have become non-negotiable at critical places for her like the doctor and grocery stores, whereas previously it would have been a challenge to get her to wear it for a prolonged period.

On the negative side, COVID has caused us to have to forgo a lot of the more fun activities we used to enjoy. We haven’t seen most of our family as they live out of state and we cannot fly to see them. We’ve had to miss out on many social opportunities with old and new friends. And last, we haven’t eaten at many restaurants. However, because these were already once-in-awhile activities instead of daily ones and we have all maintained good health, I can’t complain.

Thank you to our advocates for sharing with the community! Are you also living with CF/caring for someone with CF during COVID? Share with us below how it has impacted your life.

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