Navigating Life as a "Medically Fragile'' Person
I was at chemotherapy when a friend opened my straw for me and touched it with her hands. "This is awkward, but...I can't use that straw now. You haven't washed your hands, and your fingers touched it." It is those countless little things that healthy people don't have to think about it, and I envy them. I really do.
Navigating life when being medically fragile
Navigating life as a medically fragile person is anxiety-inducing and exhausting. Because it is not just making sure I am being careful, it's making sure those around me are being careful, too. I have trained my children to open doors with their sleeves, to take off their shoes at the door, and wash their hands upon entering. When we had a bevy of friends and family come to stay over the winter and help during my various treatments, I couldn't believe it. How often they'd walk all over the house with shoes that were just in gas station bathrooms and dog parks, or touching my things with hands that have been all over Target. I hate being that person, the germaphobe, but I have to be. Having those conversations about keeping me safe was sometimes uncomfortable, but necessary.
Accepting being vulnerable
Learning to accept it isn't easy, either. My whole life, I hardly ever even caught a cold. People were amazed by how great my immune system was. Now sometimes it's so compromised, a common cold can be fatal. Just six weeks ago, I was hospitalized for neutropenia. My neutrophils were in the zeroes, and I had practically no immune system. They had me in an isolation room and banned fresh fruit and even flowers. I used to teach three-year olds-germ magnets! Middle schoolers, high schoolers; over one hundred students in my classroom a day. And now I was so medically fragile, I could not even handle the germs of an apple. I envy people who can pump gas without wearing gloves, or use a public bathroom. It's those little things that you take for granted when you're healthy that turn into the greatest annoyances when you're medically fragile. It's hard to accept I am not as "durable" as I used to be.
Adapting to a new way of life is possible
It took some time, but I have learned to adapt, and to speak up. At the zoo with friends the other day, they all sat at the bigger, not-yet-cleaned table. I opted to stay with my children at the smaller, cleaned table. When there are too many kids at the playground, I make sure my children have bikes or scooters to ride instead. If we pick up fast food on the road, I opt for options that require utensils so we don't need to use our hands. I used to be quiet about it; after all, who wants to be the odd one out, the obvious patient, right? But I have learned that I'd rather be cautious and enjoy my life than land back in the hospital with a life-threatening infection. It isn't my ideal situation, knowing that I have to always live with that caution for the rest of my life. I'd love to be like how I used to be, but I've adapted to my new body and the actions and sacrifices required to keep it healthy.
Are you medically fragile? How do you stay healthy? Do you ever have awkward moments with friends and family about being cautious? Please share your experience with our ABC community!
Do you have an MBC mentor/mentee?