Finding Purpose Where I Wasn't Looking For It
When I was diagnosed in 2018 I was not thinking about advocacy. I was not thinking about a platform or a community or what my story might mean to someone else someday. I was thinking about surviving. I was thinking about what this diagnosis meant for my life, my family, my future. I was thinking about a thousand things that had nothing to do with sharing any of it publicly.
Advocacy was not in the plan. Honestly, there wasn’t much of a plan at all in those early days. There was just trying to get through it.
I started sharing because I needed somewhere to put it. That’s the most honest way I know how to say it. Writing has always been the way I process things, the way I make sense of what’s happening inside of me when I can’t quite say it out loud. So when my life got turned upside down and I didn’t have the words to explain it to the people around me, I started writing it down and putting it somewhere people could find it if they wanted to. It was cathartic. It was for me.
I did not expect anyone to care.
And then people did. Slowly, and then more, and then a lot. People started showing up, following along, sending messages that said “I feel like you’re telling my story” or “I didn’t know anyone else felt this way” or “Thank you for saying the thing I didn’t know how to say.” Patients. Caregivers. Nurses. Doctors. People who had never heard of pulmonary hypertension and people who had been living with it for years. They all just started showing up.
And something shifted in me when that happened.
What started as something I was doing for myself became something I was doing for all of us. The more I shared, the more I realized that the stories we think are too specific or too heavy or too much are usually the ones that connect the most deeply. Because people are not looking for perfection. They are looking for someone who is willing to be honest about what it actually feels like. And I have always been willing to do that.
Over the years the advocacy has grown in ways I genuinely could not have predicted from where I was sitting at in 2018, in a hospital room, unsure of what the future was even going to look like. I have had opportunities I never would have imagined. Rooms I never expected to be in. Conversations that have mattered. And while all of that has been incredible, it is not actually the part that gets me.
The part that gets me is the real life moments.
There is something that happens when you meet someone in person who has been following your journey, and they look at you like they already know you, because in a way they do. They have been in it with you. They have read the hard posts and the honest ones and the ones you almost didn’t share. And they show up and they say “your story helped me” or “I sent that post to my doctor” or “I found my diagnosis because of something you said” and I genuinely don’t have adequate words for what that feels like.
It has happened with patients who recognized themselves in my story. It has happened with nurses who said it changed the way they think about their patients. It has happened with people in the medical community who reached out because the perspective from the other side of the bed matters to them. Every single time it stops me in my tracks. It fills my heart and soul, and it reminds me why I do this.
I did not expect to find purpose here. I did not walk into my diagnosis thinking that this pain was going to become something I could offer to other people. But that is exactly what happened. And I believe with everything in me that it was not an accident. God has been so unbelievably faithful, He has shown up every time, in every moment, in every brokenhearted cry, in every tear and every unsure second.
Pain into purpose is a real thing. I have lived it. I am still living it.
And to everyone who has followed along, who has shared my posts, who has sent a message, who has stopped me at a conference or a clinic visit or somewhere random to say that this little corner of the internet meant something to you, thank you. Genuinely. I don’t take it lightly for even a second. You showing up is why I keep showing up.
I started this for me.
But I keep going for all of us.
xo,
g.