Your COVID Reality is Always Our Reality
Oh, 2020. You have been a difficult one, haven’t you?
COVID-19 has altered our realities substantially the last couple months. For many, this is the first time they have ever thought extensively about protecting themselves from germs. For others--those with cystic fibrosis or immunocompromised folks--distancing is nothing new, but a way of life. Although I wish the pandemic didn’t make itself known in 2020, I do think the spread of COVID has opened many eyes to this unique way of living.
During this time my family has turned to me as the “expert”. I have unprecedented and valuable knowledge and experience as someone living with CF to share with them. Truly, I’m not sure I want the title of “social distancing and masking” expert--but here we are. I never thought we would be living through an event like this. However, I can see how experiencing other's experiences may be a benefit to our community. It’s our turn to be empathetic to their transition.
Social distancing isn’t new to the cystic fibrosis community
Long before the news started reporting to local communities about the “6-foot rule”, the cystic fibrosis community knew social distancing all too well. At first, it felt weird to hear the “6-foot rule” used in everyday context on the news, in conversations between friends and family members, and in our own home outside CF. It was incredibly bizarre for my two worlds to come together in synchronicity.
Social distancing is a measure that is practiced in all CF clinics and in-patient floors among people with cystic fibrosis. In order to minimize the spread of respiratory infections, we keep a strict six-foot distance while wearing masks and gloves when in each other’s company and spaces. We know to keep six feet apart without even truly thinking about it. It has become second nature as the infection control guidelines have shaped our community--and now they shape the world as a whole.
Isolation is lonely
The public is learning that social isolation is a lot of things--but mostly, it is extremely lonely. You don’t realize how much you need people until they pose a physical threat to your health. For all my other friends and family, social distancing has been a strange and uneasy process to come to terms with. Undoubtedly, isolation can be a strain on your mental health, potentially increasing anxiety and depression.
As a cystic fibrosis community, we can relate to the feeling of loneliness cooped up in hospital rooms for weeks on end--isolated from the outside world. We know how it feels to miss out on large events due to sickness and the risk of potential sickness. Missing school, canceling vacations, and postponing celebrations, we have all been there. It all around sucks and the world has felt similar disappointment now.
Spread empathy instead
At the start of the COVID pandemic, I felt empowered--beyond the rising fear--because I knew the CF community understood infection control better than any. Arguably, we were the most practiced community. Masking up, frequent hand washing, and being aware of the potential risk around us is how we survive each cold and flu season.
It is easy to look at our friends and family and say, “Well we have done this far longer than you. You will return to normal one day, and we will not. Don’t complain." Your COVID reality is always our reality. I don’t personally believe that’s the most supportive way to use our experiences.
What if we tune in and let them know we agree that it does suck? It is hard to socially distance and live with the fear of getting sick, even without cystic fibrosis. Maybe down the road in cold and flu seasons to come, our friends and family will think twice before turning down a flu vaccine, be proactive about hand washing, and stay home when sick because our community is on the forefront of their minds. Maybe they will think back to that time they felt similar fear and disappointment and work to protect us as well. I hope, if anything, that’s a positive outcome of living through a pandemic like this.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?