Grappling with feelings of loneliness in life with chronic illness
I've often felt isolated while navigating PH and post-transplant life
One of the hardest things for me to talk about is the loneliness of chronic illness. The topic can quickly become uncomfortable for me and the person I’m speaking with. Still, it’s been a near constant in my life with pulmonary hypertension (PH), and ignoring it often only amplifies its impact.
Growing up, I had a relatively normal social life. Still, loneliness crept in because my life felt like it were split in half. There was the day-to-day of school, friends, and extracurriculars, but on the flip side were my daily disease management and the overbearing weight of my diagnosis, which none of my peers could quite grasp, especially given our age.
Living with a rare illness only compounded the isolation I felt. Many people try to understand PH by equating it to a more common condition, asthma, which can also cause shortness of breath. But that, of course, is not an accurate comparison.
My parents used to offer people an explanation that was popular in the PH community at the time: Living with PH is akin to constantly climbing Mount Everest. While this idea more closely represented the physical burden of poor oxygenation and progressive heart failure, it didn’t cover the emotional tax of medication schedules, hospital visits, and the reality of a terminal prognosis. It was also perhaps too grand of a concept for people to take seriously.
Ultimately, there was never a good way to help people truly understand what I was dealing with.
This gap between my realities grew larger during college. On the one hand, I was a nursing student, staying up late to study and going out with friends on the weekends — all typical for a 20-year-old. But at the same time, part of me was actively preparing for a heart-lung transplant as my health declined, with no way to plan for what would come after.
Of course, my transplant experience isolated me further from those parts of me that were once “normal.” I spent eight months in the hospital recovering — five of those in a facility across the country from my home state — with little access to my support system.
A cycle of highs and lows
The five years since have been filled with highs and lows regarding loneliness, a constant cycle of reunions and separations. I’ve spent so much time with my family that I’ll never take for granted, and I’ve had several life-giving experiences that, at one point, I thought might be lost to me forever.
At the same time, I’ve watched most friends move on from their first jobs to marriage and motherhood. Seeing them reach these milestones sometimes makes me feel like I’m living on another planet, so far away from the life I’d imagined for myself that’s mirrored in those around me.
On another note, I’ve managed to foster community in other spaces — mainly social media — which has fortified me in meaningful ways. Seeing others struggling on their own health journeys and grappling with similar feelings of “otherness” has reminded me that I’m far from the only person dealing with these issues.
I also know these feelings are heavier after a long winter spent dealing with sickness and opting for isolation. As the weather warms, everything will become easier, and I look forward to taking advantage of the joys that summer brings, including my 30th birthday celebration next month. Until then, I anticipate fewer lonely days ahead, even if that just means spending time outside with the birds.
Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Bill Dunlop
Great topic ! My 32 year old daugther deals with the same issues As caretakers we also grieve with her struggles We are all are so focued on the physical aspect of this disease as needed, however, I do not think we focus on the mental , emotional and financial aspect of this disease as much as we should My daughter has also found confidence and friends on online groups and in the last few years she started dating a man she met online with severe Meniere's disease . I think they both find support and solace in their struggles It truly is a new normal but it can still be worth it And as my own mother used to say " To compare is to despair " So we all need to forge our own way and make life worth living for us and for others who are also struggling
Emily Musgrave
Thank you for sharing this heartfelt relatable piece that so eloquently puts words to th3 difficult feelings we both shutter to speak of- yet isolation and loneliness consume us so that its essential to find the words, or anything, any way to release the pressure. Im going to flip a switch and choose to welcome the nicer weather. Often it hurts. On stormy days I don't feel quite so bad about being inside, unable to do anything, but on nice sunny days my heart breaks as my body aches too much to do any of the fun in the sun stuff I used to do, that id be doing if I were healthy enough to keep up with friends- it seems I got left in their dust long ago, only so many times invitations declined til they stop calling- that seems like a lifetime ago. Anyway, it's a new day. Just surviving winter alone is worth celebrating. Summer is like a break. And im never really alone, I have my little furry friends bu my side. it's the little things. Thank u for remind8ng me. The isolation gets to me too, at times I even wallow in the :what ifs" and get so sad my career and dating and social and family life were all blooming- but hey on the bright side I've always hated alarm clocks, and umm.. hmm.. oh yea the birds, I'm gona get some fresh air, soak up a lil vit D, cheers! I'm grateful, l ife could be better, but it could be worse. Lifes pretty good. Hang in there girl. Thanks for inspiring me & helping me feel comnected- we may be isolated, but we are alone together. ..we may not have it all together, but together we have it all.