The importance of connecting with others in the PH community
We all need people who understand the rare disease journey
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I lived in a rural area at the time I was diagnosed with pulmonary hypertension (PH). I didn’t meet another PH patient for nearly a year, and even then, we didn’t get to chat because we were both bouncing from one appointment to another.
That distance can make an overwhelming diagnosis feel even more isolating. You can read brochures, search online, and listen to doctors, but spending time with someone who understands you — without needing to explain the symptoms and struggles — offers something different.
After a couple of years, things shifted for me in meaningful ways. I began meeting others with PH, and the support we share is invaluable. Whether we’re sending videos of our best moments, exchanging resources, crying snot-nosed into the phone, or even just hitting the “like” button, every act matters.
Finding ways to connect
I am currently attending the Pulmonary Hypertension Association’s international conference in Dallas. If you recognize me, please come say hello. I’m eager to connect, exchange insights, and offer or receive resources and support. Let’s make the most of this opportunity to learn from each other.
Attending is a wonderful way to meet others in the PH community. If you can’t attend, consider joining online forums, participating in virtual events, or finding support groups to make meaningful connections from home.
“PHriends” can be made anywhere, from a coffeehouse in Seattle to a recliner in Dallas. Here’s another way you can connect: Look at the work of fellow patient advocates and caregivers. Let them know you appreciate what they do by leaving a comment, asking a question, or sharing a helpful resource.
Identify someone in the PH community who shares your interests and invite them to a Zoom call to introduce yourselves. Post in forums to connect with other members. Start a conversation and build relationships within the PH community, as it’s a small world.
Even if the person you connect with doesn’t live near you or share your taste in pill cases, they may know others who do. See, I just made a joke about how we compare pill cases. You got it, right? My “normal” friends wouldn’t understand the humor in that.
My humor isn’t for everyone, but that’s the beauty of the internet. Find your humorous PHriends and hold on tight. This will be a bumpy ride.
Take that first step: Look at what fellow PH patients are discussing and join the conversations that interest you. We all need ways to connect and people who understand to share our journeys with.
You could be opening the door to support, friendship, and understanding you didn’t know you needed. Don’t regret not reaching out sooner. Take the first step, however it may look to you. And visit the PH Association’s website to find a support group in your area.
Take action — for yourself and for those who could benefit from your support.
To keep up with my journey and connect with me, follow me on Instagram or Facebook.
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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