The Two Sides of Loneliness

I've found it hard to cope with CF as I have gotten sicker, and loneliness comes about in both physical and emotional ways. Even though the people in my life may not know exactly what I'm going through, I'm trying to let them in on what I'm feeling.

Sept. 24, 2019 | 6 min read
Holly Seay

Isolation is a very weird concept. I looked up the definition and the first couple of entries described “a physical state of being secluded from other buildings, places, and people.” However, if you keep reading, you'll find a definition that says, “having minimal contact or little in common with others.” That is exactly how I would describe what it is like to live with cystic fibrosis.

Growing up with cystic fibrosis, I didn't feel much different from my peers. I still went to school, played team sports, had sleepovers with my friends, and lived a carefree life — just with the added bonus of respiratory treatments twice a day, an annual hospital admission, a few all-day doctor appointments, and pills. It wasn't until I turned 17 that the loneliness from living with this illness started to set in.

For the first time, I started missing more school than I was attending. While I was admitted to the hospital three times in a single year, all for no less than two weeks at a time, I couldn't help but to feel truly different from all of my friends. While my friends were preparing to go away to college, I was just trying to keep my head above water and take classes at a local college while commuting from my family home. Unfortunately, my health became a bigger issue and I had to take a medical withdrawal my first semester. That was the last time I would be surrounded by my peers.

Over the past few years, my lung function has dropped by an alarming amount; for the first time, I've lost weight to the point of needing a G-tube; and my infections have become more difficult to treat — I need IV antibiotics every 1-2 months lasting no less than three weeks at a time. Yet, on social media all you see is a smiling face.

What people don't think about is how isolating this illness is. There are two sides to the loneliness — emotional and physical — and both contribute a lot to depression and anxiety that many people with CF face.

Physical isolation. Many people with CF become too ill to finish school or work, which forces them into an early retirement. A lot of people fantasize about not having to work and spending every day lounging on the couch getting caught up on their latest Netflix binge. “Sounds like a dream!” is a common response I get when I explain to people that I don't work, go to school, or really do anything. What they don't think about is the loneliness that comes with waking up to an empty house five days a week, not feeling well enough to leave the couch, and being alone for most waking hours.

Hospital admissions can be extremely tough, when no one is able to visit and spend quality time with you. Luckily, most nurses are great, but there are days where you just want your significant other, parents, best friend, or sibling to hold your hand, bring you Chick-fil-A, and watch trash TV together — to take you out of the mental darkness that a hospital admission can bring. But, that's not always possible.

Emotional isolation has stolen my joy on multiple occasions over the past few years. Don't get me wrong, I have an amazing support system. There is nothing in the world that my husband and family wouldn't do for me, and they try their hardest to be there for me. The fact of the matter is that they will never be able to fully understand. My parents and husband are the only ones who have seen me at my lowest and weakest moments. I truly believe you have to live full time with someone with CF before you can really start understanding all it entails.

As I've gotten sicker, I have found it more difficult to relate to my friends. My daily life looks very different than most young adults working full-time jobs. And to be frank, it's not a happy topic to focus on. They may try their best, but I know they don't know what my everyday looks like anymore and I doubt they could wrap their heads around it — most people couldn't.

The only people who really understand are my friends I've made online who also have CF. They are the only people who I know I can rant to, complain to, and celebrate with for all minor and major accomplishments, setbacks, struggles, and heartaches. My online friends understand from experience and validate my feelings. They're my security blanket. Yet, they are people I can never spend time with person, without risking both of us getting sick.

It's very hard to not be able to hug the people you feel closest to.

The depression that can come from battling an illness that none of your peers can fully understand is not to be taken lightly. When the emotional side of feeling alone meets the physical side of being alone — because you're unable to attend school, work, or in the hospital for weeks on end — it's a recipe for a mental health disaster.

As someone who is currently working through this exact struggle, I suggest to anyone who feels the same way to take control of their life and figure out how they want to live it. Making the most of evenings or weekends when your family and friends are no longer busy can help make those weekdays more bearable. Don't be afraid to express in great detail what you're going through and how you feel to your family and friends. We can't expect them to know if we don't tell them. Any friend or family member worth having in your life will understand, be glad you told them, and adapt to make you more comfortable.

Those CF friends you can't meet in person? FaceTime them, Snapchat them, text them throughout the day! It's not the same as being together face-to-face, but it helps you feel less alone in this crazy world and that could make all the difference.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Holly was diagnosed with cystic fibrosis at 3 years old. She lived in north metro Atlanta with her husband, Cameron, and their dog daughter, Winnie. Holly was actively involved in the Cystic Fibrosis Foundation starting when she turned 18. A former blog writer, she redirected her passion for advocating and sharing her experiences with CF into video. She ran the YouTube channel “Dreaming of Breathing” where she posted “day-in-the-life” style vlogs and informational videos related to CF. She also documented her struggles and accomplishments with CF through her Twitter (@LifeAsHolly) and Instagram (@hollyseay). When Holly was feeling healthy, she loved cooking, going to concerts, traveling, a good latte, or a glass of wine.

June 2023 — We were deeply saddened to learn of Holly’s passing. Holly was involved with the CF Foundation in many capacities. She was a loving wife, a dedicated friend, a fierce advocate of our mission, and a contributor to the CF Community Blog. She will be missed by many.

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