Clearly Invisible : A Season of Difficult Decisions
This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.
It’s that special time of year when we come together to celebrate, sharing laughter, traditions, and memories with our family and friends. Our calendars are filled with holiday celebrations and time with those we love. This time of year holds so much joy and excitement. But for many with chronic illnesses like cystic fibrosis, this time of year can cause a lot of anxiety and disappointment, and it can be filled with heartbreaking decisions.
People with CF are fighting today for the hope of more tomorrows. Sometimes that fight includes making the difficult decision to not attend a holiday celebration due to the risk of compromising their health. You see, this time of year paired with a room bursting with loved ones can be a breeding ground for germs and sickness. Things like the air exchange in a room, how many people are sharing the same air, and what might be thought of as a simple cold or the sniffles can be detrimental to the health of someone with CF. An uncovered cough and the sharing of unwanted germs can lead to days and weeks spent in the hospital, hours of extra treatments, course upon course of potent antibiotics, and the possibility of fewer tomorrows.
So, how can you help the person you love with CF during this beautiful and memorable season of celebrating? Show your support by:
- Letting the person with CF or their parents know if you or anyone attending the celebration have been sick. This includes the common cold or a little cough.
- Reminding the person or the parents of the child who may have to make that difficult decision that they are not alone. It’s often easier to make an emotional and difficult decision if we know we have your support and understanding.
- Washing your hands more often and covering your cough when your loved one with a compromised immune system (in this case your loved one with CF) is present.
There’s nothing quite like the heartbreak of having to make the decision to miss out on sharing these special days with the ones you love. Our hearts race with anxiety as we weigh the risks of exposure and have to make that difficult decision, mulling over the unfair realities of a life with CF and the perceived disappointment of those we love, if we cannot commit to attending a celebration. Speaking as someone with CF, more than anything we do not want to miss out on such a special time of making new memories or be vacant from the irreplaceable presence of love shared with our friends and family. But, we must be protective of every breath we are given - all in hopes of the chance to spend another holiday sharing in the beauty and love of the season.