Home takes on new meaning when managing a rare disease like PH

What turns a house into a home?

My therapist posed this question during a recent session. Initially caught off guard, I found myself pondering its depth. Eventually, I realized it was an exploration worth undertaking. So here I am, eager to dive into the exercise and share my thoughts.

You might wonder how the idea of home relates to the challenges of a rare disease like pulmonary hypertension (PH). But let’s take a moment to consider it.

Those coping with chronic conditions spend a significant amount of time within the sanctuary of their home. It becomes a place of solace amid chaos.

As I contemplate the concept, my mind wanders back to childhood. My mom used to tell me that home is wherever you make it — where you feel a sense of belonging. As I grew older and started my own family, my perception shifted. Home became synonymous with my husband and our child. It was a haven filled with love and shared experiences, including my PH diagnosis. Our roles transformed during this period and continue to evolve as we journey through the many seasons of life.

But what truly defines a home? In my opinion, it’s a refuge where you feel secure, a space where you can unwind and embrace your true self. Whether it’s a spacious abode or a humble dwelling, your home reflects who you are. For people with chronic conditions, home is often a source of comfort and safety.

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How illness affected my perspective

The significance of home was amplified for me after my diagnosis of PH, a chronic illness that turned my world upside down. Between countless trips to the doctor, frequent hospitalizations, and disruptive symptoms, my home became the center of my universe, especially during COVID-19. Like many in the rare disease community, everything took place within those familiar walls; it’s where groceries were delivered, meals were cooked, and solace was found.

Within the confines of my sanctuary, all my medications and treatments have a place, enabling me to rest and recover. I also like to surround myself with personal mementos that provide warmth and familiarity during health challenges. Cozy throws, soft blankets, and cherished family photos are little things that spark much joy.

That said, I experienced a sense of relief and lightness after downsizing and moving into a smaller two-bedroom condo with my husband, Manny. It’s uncluttered and easier to keep clean — a positive change indeed.

A physical and emotional haven

As my dad often reminds me, home holds a unique significance for each individual, reflecting personal stories and experiences. Dad asks when I’ll be “coming home,” unaware I already consider myself to be there. He’s referring to his childhood home in the countryside, a place I enjoy visiting for its homely charm and cherished memories. However, home for me is my current residence in Southern California.

But home encompasses more than a physical space; it’s an intangible feeling, an emotional connection. It’s the place we yearn for in moments of discomfort and where we gather the strength to face life’s challenges, one day at a time.

On difficult days, when my chronic pain, PH symptoms, medication side effects, and sheer exhaustion weigh me down, I’m grateful I can retreat to my little haven — my home.

What does home mean to you? Do you have any tips or tricks for creating a soothing and comfortable environment for managing PH? I’d love to hear about your experiences, so please share your thoughts in the comments below. 

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.