Real voices, real change: listening to lived experience with mental health

October 10 is World Mental Health Day

When we talk about pulmonary hypertension (PH), we often focus on symptoms, medications, side effects, and medical appointments, but taking care of yourself when you have PH means looking after more than your physical symptoms. Your mental health matters, too. Acknowledging the emotional impact of PH tells a more complete story.

Talking openly about mental health helps normalize the emotional challenges that can come with a chronic illness. It can help other patients recognize their own experiences, encourage families to start important conversations, and remind health care providers to consider emotional well-being alongside physical health.

Mental health experts provide valuable knowledge, but patients must often seek out mental health support themselves, adding another challenge to an already demanding journey. People with lived experience can help others feel less alone and highlight the kinds of support (and where to find it!) that make a difference.

Sharing these experiences can also highlight gaps in care. Patients should not have to navigate the health care system alone to find the mental health support they need. We need a system that recognizes mental health as an essential part of chronic disease care and makes appropriate supports available and easily accessible.

Make mental health part of your PH story

Here are a couple of resources to help you put your story together.

• A short tip sheet on storytelling for advocacy from The Health Center Advocacy Network 

• A longer how-to guide on telling your personal story from Advocacy Solutions

PHA Canada has several mental health resources (scroll down to the Mental Health section) for both patients and caregivers, as well as a recording of a webinar on Facing Mental Health Issues.

Talk with your care team about emotional well-being, listen to others’ experiences, and share your own story if you feel comfortable. Together, we can reduce stigma, raise awareness, and advocate for a health-care system where every person living with PH can access the mental health support they need.