Our PH journeys are unique, so let’s avoid making comparisons

Pulmonary hypertension (PH) manifests and affects us each differently, adding to the complexity and mystery of the disease. Let’s continue to support each other, even as we acknowledge that our journeys are unique. In doing so, we can bring awareness and relief to others with PH.

No matter where you are in your journey, a community of people understands what you’re going through. Whether we’re discussing treatments and symptoms or sharing stories about managing everyday life with PH, connecting with others can bring support. We each have something valuable to contribute and gain.

We all struggle sometimes

In terms of PH, and life in general, making comparisons and assumptions does more harm than good. Regardless of our experiences and circumstances, we all deserve respect and kindness. It’s time to break free from the need for external validation and embrace who we are in all our wonderful and imperfect glory.

Remember, we’re in this together. Managing our symptoms and side effects is hard enough; we should never feel ashamed or embarrassed about our struggles. Let’s spread the love!

My early symptoms of PH included increased fluid retention, shortness of breath, and syncope. My daughter, Kayla, recalls watching me crawl up the stairs to bed. Although my family and I knew something was wrong, getting concrete answers took months.

The diagnosis of a rare and incurable disease scared us to death. However, we didn’t let PH control our lives. Kayla has seen me go through so much since my symptoms began in 2005, but thank God, she focuses on the positives in life and makes every second count.

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Symptoms wax and wane

Today, I’m grateful to be in a more stable phase. Yes, I continue to struggle with symptoms and use supplemental oxygen. It offers my body the oxygen it needs to do simple activities of daily living like walking and showering. I even do short walks and ride my e-bike while carrying my portable oxygen tank in my backpack. Some days I need more rest than others. But that doesn’t mean my disease is better or worse than someone else’s. It means that we are different.

Yep, I’m fortunate each day I wake up breathing

Sometimes people in our community tell me they wish to do what I did that day. Others say I’m lucky not to need continuous oxygen like I have in the past. But they don’t see the struggles that I don’t share.

There can be a temptation to compare our struggle with that of other patients, but since our journeys are so different, there’s only one person we should compare ourselves with: the person we were yesterday. This practice allows me to show myself grace and understanding and grow stronger every day.

Together, we’ve got this

While PH is challenging, it can be less overwhelming when we share our experiences with others. People in our community are often very empathetic, eager to help others reduce their suffering. We share not for comparison but for support.

By continuing to come together in person and online, we can learn more about the many faces of PH. Various perspectives show how our individual stories fit into the bigger picture.

Let’s embrace our similarities while recognizing our differences; it strengthens us. We’re stronger when we work together to find a cure and bring awareness to PH and its impact on us and our loved ones. Instead of making comparisons, we should aim to be our best selves daily.

Let’s create a more informed, compassionate world for everyone living with PH.

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.