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Some of my greatest friends that I have, I have met online through the disease communities that I am a part of. I am part of a few pulmonary hypertension support groups on Facebook and follow many with PH and congenital heart defects through my Instagram account. I love having those friends to support me who truly “get it”. I am really fortunate to be living in an age where technology is allowing me to communicate to friends who I never would have met.
Sometimes when I don’t feel like I have the energy to go out and actually “meet” friends for coffee or dinner, I do video chats with my friends online and ones that I have met online and we have “coffee dates” or catch up vent sessions virtually.
Do you find that you “meet” friends in the disease communities online that you are a part of? How have these friends helped you? What makes these types of relationships different than other friendships you have in your life?
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Asides from the research I’ve done for official purposes on the subject, I personally agree that we meet friends over groups like this. PH is a relatively rare condition and those of us with PH after surviving heart defects are even rarer.
In terms of stats, even if you live in NYC with 50 million people within 50 miles of you, it’s unlikely you’ll find all that many PH/heart defect patients to mingle with on a regular basis.
I try to make online friendships, especially when they’re about critical social support for my rare condition(s) very similar to real life friendships in terms of trust and openness. The risks and benefits of meeting people online are pretty similar to the hazards of finding friends in real life.
Granted, this is one of the first places I’ve reached out to about my own condition. I didn’t even know I’d need special social support until learning in my mid 20s that lung problems are bad enough to significantly reduce lifespan. And, I often don’t like to think about how ill I am and therefore don’t look for support as much as I should — or until I really feel sick.
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I understand what you mean VK. Growing up I never connected with one other person with congenital heart disease. It wasn’t until I went to the conference and started meeting people online that i was in awe of the fact that every person in that room had faced similar challenges and had the same scar as me. It was pretty surreal actually. It’s good that we have technology to connect us and a chance to “meet” and talk with people who “get it” . It’s even better if you have someone living close by to talk to. I have friends with chronic illness and even though their conditions aren’t exactly the same as mine, we still are able to bond on different levels. Everyone has their “something” they go through.
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