One Pedal Stroke at a Time: Finding Strength with PH
Carson Smith shares her pulmonary hypertension journey and volunteer impact in honor of PHA’s Volunteer Appreciation Week, April 19–25.
Carson Smith was diagnosed with pulmonary hypertension and pulmonary veno-occlusive disease in 2003, in high school. She learned to navigate living with PH through life’s milestones, such as attending college and starting her first job. The 39-year-old now resides in Baltimore, Maryland, and is a peer mentor. We share her story for Volunteer Appreciation Week, April 19-25, and thank her and all PHA’s amazing volunteers for providing support, connection and empowerment to the PH community.
Twenty-three years ago, I was diagnosed with pulmonary hypertension as a sophomore in high school. Because PH is chronic, I initially didn’t know how my life would look with this condition. It was hard to accept that PH would always be with me. But as the years have passed, I have built a more comfortable relationship with my PH. It has become a small piece of who I am rather than my whole identity, and that has made it more manageable.
In 2023, I became a peer mentor, hoping to help others navigate life with PH. When I was first diagnosed, much of what I read online felt like a death sentence, and no one should have to feel that pit of hopelessness. Whenever I connect with other people with PH, I want them to feel heard, understood and supported. Even though friends and family try to understand, PH can sometimes feel isolating because it’s a rare condition. I hope with each interaction I have, I can help those with PH feel more validated and seen.
One pedal stroke at a time
I love movement, so throughout my life I have always had to find a balance between managing my PH and fitness. I approach all physical activity slowly at first and pay a lot of attention to how I’m feeling. I gauge how far I should progress based on my body. This is the same advice I would give to anyone who is hoping to stay or become active: Start small, listen to your body, celebrate your wins and don’t compare yourself to others.
In the summer of 2023, I completed the Register’s Annual Great Bicycle Ride Across Iowa, a 500-mile bike ride across the state with overnight camping. I was so nervous about this ride, but I trained all summer and was so proud of myself for completing it.
Strength in numbers
The biggest help for me in managing my PH was, and is, my support network. Having a community I trust and can confide in when I am feeling overwhelmed is crucial to not letting this disease consume you.
Maybe even more important, I listen when the people in my life remind me to put my health first. Sometimes it’s easy to run yourself down, so having people who keep you in check is important.
I have not shied away from sharing my diagnosis with others and explaining how PH impacts my life. I’ve found that when people understand they are usually eager to give me a hand when I need it.
As I continue to live a fulfilling, fun, “normal” life, I want to give others the hope of what their life can look like with a PH diagnosis. I understand that my experience with PH is unique, but I think it’s important to share how much a positive attitude, a strong support network and celebrating small wins have helped me in the hopes that it can help others.
Want to volunteer for PHA’s support programs?
Carson says volunteering is flexible, as you can decide how involved you want to be and set your hours. She encourages anyone considering volunteering to take the next step and apply.