From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s guest is Mallory Smith, a 23-year-old writer living with Cystic Fibrosis and a treasured friend of Emily’s. A freelance writer and editor, surfer, volleyball player, and dog lover, we invited Mallory to share her experience as only another young woman living with CF can.
One of the cruelest aspects of living with Cystic Fibrosis (CF) is the fact that, as patients, we are unable to spend time with the very people who understand us most – fellow CF patients.
Having a chronic illness is isolating no matter what, especially as the disease progresses and draws starker and darker lines between the “normal” and the “sick.” In my experience, as I’ve gotten older, I’ve found it harder and harder to explain to my incredible community of friends and family the emotional complexities of life with CF. Living with a ticking clock by my side, reminding me of the median life expectancy of Cystic Fibrosis patients, has a way of sharpening my priorities, but also of keeping life-and-death issues at the forefront of my mind, all the time.
Back in the day, CFers were able to lean on each other for support. But now, as science catches up to the disease’s mechanisms, guidelines warn patients that being in proximity with each other poses the dangerous risk of cross-infection.
Cystic Fibrosis patients can infect each other with life-threatening bacterial lung infections that are innocuous to the healthy. So we stay away from each other. We wear masks at the hospital and doctors’ offices and the official recommendation is that only one person with CF attend indoor events to avoid spreading our germs to others with CF. For me, since I was 11 years old (when I was infected with the infection Burkholderia cenocepacia), this guideline has been especially strictly enforced.
Enter social media: a blessing and a curse for CFers seeking support, community, friendship, or mentorship.
For my entire childhood, I didn’t know any other people with CF. That changed when I started receiving my care at Stanford University when I was 17; I found myself hospitalized 5-6 times a year, parked just a few feet away from CF patients whose coughs I could hear at night through the hospital walls. My community bloomed as I entered a rich and vibrant network I never knew existed. Friendships that often started with walks by the hospital fountain were maintained through texting, FaceTime, and Facebook.
My friendships with other CFers have enriched my life and helped guide me through the tougher days. Emily and I met through the Internet in 2014. Over the last year, as my own health took a dramatic downturn, Emily and I have spoken often, discussing everything from our families and friends to our fundraising efforts, our views on bioethics issues affecting the CF community, and our personal health complications. From Emily and other men and women with CF, I’ve learned how to manage illness with grace, positivity, and a tenacious fighting spirit.
But the rewards of these friendships do not come without a cost. For a moment, imagine how you would feel if a friend of yours passed away (or, how you have felt, if you’ve experienced such a tragedy). It is a crushing blow that causes a heartache no one can fathom without feeling it directly. Now, imagine that your friend dies of a disease you know will most likely one day kill you too, possibly in the same way. That is the reality of having many CF friends. We grieve for the friends we lose, while preemptively grieving for our own families, and for ourselves, too — for opportunities lost or curtailed; for dreams taken away.
Hopefully, one day, kids and young adults with CF will never have to watch their friends die; but we are not there yet. We still weep for the deceased and fear for ourselves whenever a CF angel gains their wings, and we do this far too often.
My relationships with other CFers have been one of the best parts of my emerging adulthood so far. I would not be the person I am today without those friends. The value of these relationships, for me, far outweighs the cost of this frequent grieving.
Joining the CF social media network has been a beautiful blessing in my life. For some, it might be too hard to see sicker friends suffer. But I’ve found that the CF community is a resilient bunch, with a deep well of strength that can be drawn from in the hardest of times. Until we accelerate the pace of research and find better treatments or a cure for CF, we will need to keep drawing on that strength and supporting each other as best we know how.
You can read more about Mallory’s experiences on her Medium page.