Defining your ‘good days’ can help ease burden of living with PH

Living with a rare disease like pulmonary hypertension (PH) brings sudden, overwhelming changes. If you or a loved one recently received a diagnosis, you likely know the intense emotional weight that follows. Fear, stress, and anxiety frequently accompany the physical symptoms in those early days.

Because May is Mental Health Awareness Month, I want to talk about an essential piece of our care regimen. Mental Health America chose the theme “More Good Days, Together” for 2026. The theme encourages us to reflect on what a “good day” actually means. Good does not always mean productive or overwhelmingly happy. Sometimes, it means a day is calm or simply manageable. Only you can define what a good day looks like, and that definition will evolve.

Navigating the darkness

The emotional toll of a rare disease isn’t talked about enough. Mental health demands the same priority as physical symptom management. Our minds often engage in a quiet, relentless struggle, which is not the name I often refer to this vicious mind game. This fight is a constant battle between acknowledging the severity of our illness and desperately wanting to live a “normal” life.

When doctors diagnosed me more than 20 years ago, I sank into a profound season of darkness. I sobbed whenever I was alone, as I felt I would have to “PHight” this battle alone. I avoided going out in public, even skipping gatherings with close family and friends. I was grieving the person I used to be. Many people around me struggled to accept that I was no longer the endlessly busy nurse and caretaker they once knew. Sadly, several friends faded away completely, unable to handle the reality of my condition.

Mental turmoil is not a passing phase we can easily brush off. Those of us managing emotional hurdles know it remains an ongoing effort. Even during our brightest stretches, the fear of a physical or emotional setback lingers in the background.

Finding our good days

Managing PH involves countless medications, treatments, and appointments. It is incredibly easy to lose yourself in the medical chaos, but you must fiercely protect your emotional well-being. The stress of this condition wears heavily on us. We often feel isolated or misunderstood by people who cannot grasp the complexities of pulmonary hypertension. This isolation breeds loneliness and depression.

Please remember that you are not alone. An entire community understands your daily reality and stands ready to support you. Protecting your mind involves seeking genuine connection. Join online support groups, engage with the Pulmonary Hypertension News forums, talk to a trained therapist, or lean on trusted family members. Practice self-care through quiet reflection, gentle movement, or whatever brings you peace.

You are a strong, resilient person. Your journey with PH carries heavy burdens, but it does not define who you are. You remain so much more than your medical chart, or the job you do, or can no longer do.

This month, I challenge you to reflect on what makes a “good day” for you. For me, a good day is when I can smile and breathe without intense struggle, my pain is better managed, and I can spend time with family. How do you define a good day?

Recognize those moments of joy and celebrate your small victories. It’s about the smallest things that can mean the most. Taking care of your mind is the most powerful way to reclaim those good days.

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.