By Sharing Our PH Stories, We Can Offer Hope and Connection

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by Jen Cueva |

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“The courage it takes to share your story might be the very thing someone else needs to open their heart to hope.” — Unknown

My hands were clammy and my heart was racing as I waited to meet a prospective new primary care provider (PCP). I sat in the exam room, answering the medical assistant’s long list of questions.

When I handed over my list of medications and diagnoses, the assistant froze. We both became emotional as they shared that one of their family members had been diagnosed with pulmonary hypertension (PH) two weeks earlier.

The assistant made a copy of my current list of medications and thanked me for sharing my story. We talked about how scary it can be to read about PH online. I shared some credible resources along with my name and phone number, and said they could contact me anytime.

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As the assistant left the exam room, I reminded them that their family member needed to see a PH specialist and start treatment immediately. It might be a long journey, but I reassured them that a quality medical team can make a big difference.

Unfortunately, this new PCP didn’t work out. That’s an entirely different column. But the silver lining is that I got the chance to share my PH journey and offer hope to the loved one of someone newly diagnosed.

Although our journeys often bring heartache and hardships, they are incredible assets. When I was diagnosed with PH 17 years ago, I never imagined that I’d be so vulnerable about my life. But it’s worth it if one person gains hope, a doctor gains better insight, or researchers grasp the patient perspective because of my story.

Since many healthcare professionals have little experience identifying and treating patients with PH, most patients and their family members must learn about the condition themselves, or rely on other patients and caregivers.

Our PH stories can be invaluable to those with similar experiences. People in rare disease communities may spend years trying to find others who can relate.

When I was diagnosed with PH, I didn’t know anyone who had it. I was elated when I finally met a few other patients through Pulmonary Hypertension Association chats. Talking with others who had experienced what I was going through was priceless. Sharing our experiences validated that we were not alone.

Personal narratives help us connect with others, but telling our PH stories can also break down barriers in knowledge. Medical jargon often distorts what it means to live with PH, making it difficult for people to understand or relate. We can help those still searching for the correct diagnosis by sharing our stories.

Today, I continue to share my PH journey in my column here and by co-moderating the Pulmonary Hypertension News Forums. Before PH, I was known as the shy sister among my siblings. It was challenging for me to open up about my life.

If you’re like me, it will take some time before you’re ready to share your story, and that’s OK. I’m no longer the shy one. Learning how my story offers hope and inspiration encourages me to continue sharing.

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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