I was diagnosed with idiopathic pulmonary arterial hypertension in 2005, and like many others, my world changed overnight. Nearly two decades later, I’ve learned a few things —about the disease, about my body and especially about being a man living with a serious, invisible illness.

Men and PH: The quiet minority

PH affects more women than men, and that’s reflected in patient communities and support groups. At meetings, men are often outnumbered by women, sometimes dramatically so. That’s not necessarily a problem, but it can create a sense of isolation. And unfortunately, many men are less likely to open up about their health, emotions or vulnerabilities. That silence can be dangerous and lead to further loneliness.

Talking about our experiences, fears and challenges, whether with health care professionals, family or fellow patients, is essential. PH isn’t just a physical condition. It affects every part of life, including our mental health. And yet, many men still feel pressure to “tough it out” or pretend everything’s fine. We need to change that narrative and create safe spaces where men can feel validated, heard and understood.

The pressure to provide

For many men, work and the role of “provider” are tightly linked to identity and self-worth. When PH forces you to reduce your workload, or stop working altogether, it’s not just a financial issue. It’s an emotional one. Losing the ability to provide can lead to shame, anxiety or depression. Strategies to maintain expectations and find happy mediums should be discussed with both family and medical teams.

Intimacy and self-esteem

Sexual health and self-image are other topics that men often avoid. PH and its treatments can affect libido, energy and self-confidence. For men, these changes can be hard to talk about and even harder to accept. But acknowledging these challenges is the first step toward finding support and solutions. We are not alone in this.

For more information download PHA’s free booklet, Living With PH: A Guide to Intimacy.

Over the years, I’ve developed a personal strategy to stay physically and mentally strong. I call it my PH survival guide, and while it’s not specific to men, it touches on the areas we tend to neglect. A few key points:

  • Reduce stress: Make lifestyle changes and stay connected to friends and family.
  • Live healthy: Eat well, exercise daily at low intensity (e.g., walking), and prioritize rest. Sleep at least eight hours a night.
  • Stay informed, but don’t obsess: Maintain regular communication with your PH team and other long-term survivors. Be aware of the latest treatments and research breakthroughs in the field and don’t be afraid to ask questions.
  • Watch your mental health: This condition is chronic and can take a serious toll both mentally and emotionally. Talk to someone. Don’t be afraid to ask for help. Please do not suffer in silence.
  • Adapt and accept: You may not live the life you once had, but you can still live a full life with adjustments. Prioritize what makes you happy. Accept that there will be bad days, but know those bad days will pass, and the good ones will flow.

Final advice

To other men with PH: Don’t be silent. Talk to others, especially other men. Share what you’re going through. Learn from one another. And above all, ask for help when you need it, whether it’s emotional, medical or practical. You’re not weak for doing so. You’re wise.

Living with PH is a challenge, but with knowledge, connection and support, it’s one we can rise to.