A PHriend Unseen Can Be a PHriend Indeed

Online friendships can prevent the loneliness that can come with PH

Colleen Steele avatar

by Colleen Steele |

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It’s easy to compare friendship to a favorite painting or song when making a personal connection through experience, emotion, fear, or hope.

But allow me to take the comparison a bit deeper.

You don’t need to meet an artist to feel moved by their painting or lyrics to a song, and you don’t even have to meet face-to-face to consider someone a good friend. I’m not sure I would have grown to fully appreciate this if my son Cullen hadn’t been diagnosed with pulmonary hypertension (PH).

I hate giving the disease credit for anything, but while stumbling in its darkness, I’ve made lasting friendships with many whom, 14 years later, I still haven’t seen in person and possibly never will.

My first faceless friends

Before Cullen’s PH diagnosis, I don’t think I would’ve struck up a conversation with a stranger via email, let alone shared personal experiences, feelings, and advice with them, yet this is what I did.

In 2008, I joined a small support group for parents of children with PH. That was when social media platforms weren’t yet popular for such purposes. The members communicated through email, so we never saw each other.

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Our small group of PH moms became fast friends thanks to shared experiences, trust, empathy, and respect. In 2010, one of us explored the next level of awareness by starting the Facebook group “Families of children with Pulmonary Hypertension.” Today, that group has at least 1,700 PHriends!

Cullen no longer has PH since receiving a heart and double-lung transplant in 2014. I could’ve left the PH support group, but I remain — not just as a PH advocate, but as a caring and loyal friend.

I’ve made a career out of making friends

I’m fortunate to have a job where my co-workers are not just professional associates. I also consider them good friends — even if I haven’t met them in person. I feel the same about the people whom we serve.

As co-forum moderators for Pulmonary Hypertension News, Jen Cueva and I use our personal experiences to encourage conversation, answer questions, address concerns, and promote self-advocacy and awareness. We also find ourselves learning, sharing, consoling, being consoled, and celebrating the joys in life as much as the others.

To us, logging into the PH News Forums doesn’t mean checking in on members, but looking in on friends.

I’m friends with my wife, but I’ve never met her

Jen and I jokingly refer to each other as “my forum work wife” or “FWW.” But we’re more than co-workers with a goofy sense of humor. We’re close friends. She’s a PH patient, and I’m a PH and transplant caregiver. Through laughter and tears, we’ve shared personal and professional experiences by phone and forum, but never in person.

We hope to meet someday, but the strength of our friendship doesn’t rely on it.

Your friends are waiting

PH can make you feel many bad things, but loneliness doesn’t have to be one of them.

I encourage patients and caregivers to join the forums, not just for advocacy’s sake, but for the benefit of friendship. We walk each other through the darkness of the disease, but also lead each other into the light, where we discuss hobbies, food, travel, family, pets, celebrations, and more. We know you’re more than this disease, and we want to hear about the other essential things in your life that make you you.

We also honor the best part of a strong friendship, and that’s not making you feel like you have to talk if you don’t want to. Select a corner of the forum to pull up a metaphorical chair and proceed to read whatever interests you. Contributing to the discussions is always welcomed, but never expected.

“Walking with a friend in the dark is better than walking alone in the light.” — Helen Keller

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.


Rosemarie Selkirk avatar

Rosemarie Selkirk

I just want to thank for your dedication .It is my go to everyday.I feel like my family doesn’t always understand but here everyone understands.The info, quotes and jokes keep me going.and I am not crazy. God Bless each and everyone you for what you bring to this forum❤️Rosemarie


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