How I Cope With Loneliness While Living With Chronic Illness

Living with chronic illness is often a lonely road. Born with cystic fibrosis (CF), I’ve often struggled with isolation, feeling alone, and living a different lifestyle from most people. Before joining my disease community, I thought I was the only one. Thankfully, I’ve developed skills for coping with loneliness.

Before my double-lung transplant in 2017, I spent a significant amount of time in the hospital due to CF exacerbations. I missed out on family events, outings with friends, and living life the way I’d envisioned. Even though I made friends with hospital staff and had frequent visitors, I had this underlying feeling that nobody knew what it was like for life to screech to a halt, to have to drop everything and live in the hospital for two weeks at a time.

I was often homebound due to respiratory infections, and for a few years leading up to my transplant, I was very sick and didn’t have the energy to go places. I would also stay home and avoid crowded venues to prevent myself from getting sick. Unfortunately, this often meant skipping fun plans. I frequently had to cancel, which left me alone at home.

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Over the years, I’ve learned various strategies that help the loneliness hurt less.

A strong and positive mindset is vital to my well-being. Making the distinction between truth and lies immediately extinguishes the idea that I’m the only one whose life is like this. Meeting people who are in similar situations has helped me feel less alone. Writing has been a therapeutic outlet for emotional processing. Having a therapist has been essential to my personal growth. Friends keep me company via FaceTime. And finding passions that I can pursue whether I’m at home or in the hospital has helped me fill my time with meaningful activities.

Loneliness can feel like a deep ache in my soul that nothing can soothe. It hurts to be isolated while witnessing others living their lives without interruptions. It’s frustrating and painful to miss out on events and adjust my schedule according to my health. And my mental health is negatively affected when I don’t proactively use my arsenal of coping strategies.

I’ve learned that nobody will ever fully understand how I feel in any given situation. I can try to explain the magnitude of how my health has affected my life, but most people won’t get it completely. And that’s OK, because the same is true for me, too. In my limited human capacity, I can’t entirely comprehend how others have been affected by various life events, both positive and negative.

Even though isolation is hard, I’m not alone in feeling lonely. Everyone experiences loneliness at some point, though the feeling is especially prevalent in the chronic illness community. Connecting with people who have been in similar situations creates space to process heavy emotional matters, provides us with empathetic listeners, and offers comfort, encouragement, and healing. A sense of camaraderie draws us closer together.

Loneliness can be painful, but my experience has taught me that it can also be a gift. When I shift my perspective, I see that good things have happened in those times. Through my loneliness, I have written some of my best work, grown closer to God, and strengthened my character. It’s given me the time and space to grow more into the individual I’ve worked so hard to become. Yes, loneliness also has incredible potential to refine us if we give it permission to do so.

If you’re struggling with loneliness due to chronic illness, remember that you’re not alone.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.