PH Has Changed Me in Profound Ways

I often hear that I’ve changed since my pulmonary hypertension diagnosis. I constantly speculate about whether this might be true, and then repeatedly realize it’s pretty accurate.

Surviving every day with a rare and life-threatening disease like PH takes a toll not only on my body, but also my psyche, which is affected more than I care to acknowledge.

I was diagnosed with PH at about 30. At the time, I was a wife, mother, daughter, sister, aunt, friend, and nurse, among other titles. I hate to admit it, but my relationships in each of these roles have changed. Yes, PH has changed me, and it continues to do so today.

Would these relationships have changed if PH weren’t in the picture? Of course. All relationships change as we evolve as people. Sometimes this can be overwhelming and scary, no matter who you are. Everyone wants a bit of “normalcy” in our lives. But PH causes my loved ones and me to continuously have to adapt to a “new normal.”

In addition to physical changes, adapting to mental challenges are like conducting an ongoing war.

Last year, I pondered about how brutal all of this is on my family, and the guilt that I deal with every day. So, riding the encouragement of a few close PHriends, I decided to seek therapy. I never thought I would need a therapist, much less that I would benefit from one. But, y’all, I have benefitted from therapy in many ways.

With therapy, I am discovering more about myself, although it isn’t always easy and some topics are tough to discuss.

PH has dismantled me in more ways than I could have imagined. Because of PH and my coexisting illnesses, I sometimes have memory loss, aka brain fog. This brain fog frustrates me, and I know it affects my loved ones, too. I admire their patience, yet the look on their faces when this happens often crushes me.

Despite these difficult experiences, PH also has led to positive changes, including showing me that I am stronger than I knew. Because of PH, my body has bounced back time after time, to the amazement of my family, my medical team, and me. Our bodies are incredible machines. Each time this happens, I tend to appreciate and love my body more.

In dealing with my team of doctors and other medical staff, I have learned to better advocate for myself. Fighting with my insurance company about needed tests and procedures has made me stronger. Hiding my debilitating chronic pain and trying to smile when dealing with it has made me a warrior.

So, when someone asks me if PH has changed me, I will hold my head up high and answer proudly, “Heck yeah, it has!” It has made me stronger, more resilient, and more powerful. I am a warrior who suits up every day to conquer the struggles of living with PH and coexisting illnesses.

This causes me to love more and push harder. I realize that I am a different person today than I was before my PH diagnosis, and I am OK with that. I am still a wife, mother, daughter, sister, aunt, and friend, among other titles.

I also am fiercely rare.

In each of these relationships, I hope that I will continue to bring the best version of myself that I have evolved into because of PH.

PH continues to change me, and I know that I will accept this fact. I tend to resist those changes on some days, while on others I give in and allow my body and God to take over.

How has PH changed you or your loved ones? Please share in the comments below.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.