How PH taught me the importance of listening to my body

The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew I had to listen to my body and change my plans, so I ordered a car share and headed to a nearby urgent care.

I had arrived in the Hoosier state the previous night to attend the Pulmonary Hypertension Association’s conference, a biennial gathering that brings together patients, caregivers, medical providers, researchers, drug manufacturers, and advocates across the broad pulmonary hypertension (PH) community. I was excited to spend a few days reuniting with friends, learning about the latest treatment developments, and educating myself even more about this disease that affects the heart and lungs.

Unfortunately, I twisted my leg trying to exit the back of a car on my way to dinner. When I put my foot on the ground I could barely stand. The pain felt excruciating. All this intensity from a simple yet ill-timed leg motion. The physician at urgent care suggested that perhaps this movement aggravated some ignored chronic problem.

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Learning not to ‘power through’

Going to an urgent care in an unfamiliar city might not sound like a page-turner worthy of a column. After all, getting an X-ray, a knee brace, a shot for the pain, and hearing I might need an MRI doesn’t necessarily compare with being life-flighted off a mountain in 2006. But something happened in those 18 years that connects these stories: a PH diagnosis.

Prior to managing this disease, I didn’t always prioritize my health. Rather than take a moment to hear what my body wanted to tell me, I would do my best to power through and complete whatever activity I was doing. I thought speaking up about my health among friends or colleagues would back me into a vulnerable corner and highlight my needs. Talk about uncomfortable — or so I thought.

In retrospect, this line of thinking seems silly. Not only does it make it more difficult for those around me to help, but it also puts my health at greater risk. During that 2006 snowboarding trip with friends, I knew I was having trouble breathing. I knew something was wrong. Still, I stayed quiet and tried to manage it myself. This only made for a more dangerous situation. Had I spoken up, perhaps my friends could’ve helped me get medical attention sooner.

The side effects of a chronic illness like PH are impossible to ignore. When I get short of breath from walking up the stairs or overexerting myself, I know fairly immediately that I need to do some oxygen therapy and rest a bit. I also know when my PH flare-ups take a turn and I need to go to the hospital.

Living with PH has taught me to listen to my body and act quickly. In that spirit, I chose to prioritize the long-term health of my knee over my scheduled obligations in Indianapolis.

Choosing help and rejecting shame

Putting my health first also means asking for help as needed. To maintain a high quality of life while managing PH, I’ve learned to choose comfort, wellness, and fun over shame about what others may think of me. This may include wearing a cannula and using my portable oxygen concentrator in public or getting wheelchair assistance at the airport to improve my flying experience. I brought the same attitude to the PHA conference when I requested mobility assistance, enabling me to enjoy the event.

Thanks to a mix of wheelchairs, a recommended scooter rental, my partner, and plenty of PHriends willing to help me get from point A to point B, I was reminded of all the good that comes from asking for what we need, when we need it. In scooting around the hotel, I even ran into fellow PH News columnist Jen Cueva. I was so happy to meet Jen in person and share stories.

We should all be so lucky to have a village of folks ready to pitch in, if only we can say yes to their help!

Readers: What are your tips or recommendations for prioritizing your own health? Share in the comments. You can also follow me on X: @mnaple. 

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.