How friends can help ease the burden of living with PH and other illnesses
You don't have to walk this journey alone
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“When the world is so complicated, the simple gift of friendship is within all of our hands.” — Maria Shriver
If you or someone you love manages a rare disease like pulmonary hypertension (PH), you already know how deeply it touches every part of life. From everyday tasks to long-term plans, living with PH can feel overwhelming and, at times, lonely. This is exactly where the quiet power of friendship makes a difference.
Living with a rare disease often means walking through unfamiliar territory, both physically and emotionally. It can be hard to find people who truly understand what you’re facing. But when you reach out to others who are managing a rare disease, too, you begin to build something priceless: a support system that gets it.
Why friendship matters so much
Friends who understand your reality offer comfort on the hard days and strength when challenges pile up. They share advice, point you toward helpful resources, or simply listen when you need to be heard. Being part of a community of people facing similar health struggles can ease those feelings of isolation that so often creep in.
Friendship also lifts our mental and emotional well-being. It can boost your confidence, lower stress, and brighten your mood. That matters even more when you’re juggling complicated treatments or living with the uncertainty that PH can bring.
There’s an unspoken bond between people who have walked similar paths. That understanding creates a support network that goes far beyond practical tips. Through friendship, those of us living with rare diseases find strength, comfort, and companionship. Having someone to talk to who truly knows the daily weight of PH can make all the difference.
Still, forming those friendships isn’t always easy. When you feel disconnected because of your condition, reaching out can feel like a mountain to climb.
Finding your people
This is where online communities and support groups become such a gift. Technology and social media have made it easier than ever to connect with others who share your experiences. These spaces bring people together from all over the world based on shared understanding, and they’re full of reliable resources for managing PH.
Because I’ve been managing PH for over two decades, I now have the honor of connecting with those who are newly diagnosed. Many are searching for a familiar place, a comfort zone, someone who has been there and knows how it feels to find a new normal after a PH diagnosis. What I tell everyone who reaches out is this: Yes, it’s overwhelming and frightening. But with the right team, mindset, and resources, you can live a good life despite PH.
I’m always open and honest. I have good days and not-so-good days, but I keep celebrating new milestones, and I’ve made it through some of my hardest moments.
I also remind people that everyone is different. What works for me may not work for you, and vice versa. Having a knowledgeable PH specialist and care team, along with open and honest communication, makes a real difference. We can share our experiences freely, but you and your healthcare team are always the best team to make any changes.
Not all of my friends are in the PH community. I have several close friends who live without any chronic or rare disease, and I treasure them. Others manage conditions like multiple sclerosis, sarcoidosis, and spinal muscular atrophy. Being friends with people who manage their own conditions helps us understand one another in a way that’s hard to find with those who have never lived the daily routine a rare, chronic illness demands.
Friendship takes energy, something that’s true for all of us. But the support of good friends, both inside and outside the PH community, is worth every bit of it. You don’t have to walk this journey alone. Reach out, stay connected, and let the people who understand help carry the load with you.
What are some ways that friendship has improved your PH journey? I’d love to hear your thoughts in the comments below.
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.
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