PHriends and Heart Friends

One of the most important things for someone who is living with an illness of any kind is having a support system. Often times it consists of family and friends, but if you're lucky - you have a support group made of people who are sick like you are. In my life I have CHD Friends and PH Friends (the PH community call them 'PHriends' while CHD friends are called 'Heart friends' ). 

I have had the pleasure of meeting some amazing people over these past 21 years who have either had a Congenital Heart Defect or Pulmonary Hypertension (and at times, both!) like me. What is so beautiful about these communities is the fact that when you meet them - you instantly have a connection. You are instantly family. We all have been there, we understand what it is like to struggle for weeks in the hospital, we understand what it feels like to have IV after IV put in, we understand the frustration of just wanting to feel healthy. 

Some of these friends you make along the way, you don't talk to as often as you would with the friends in your regular social group but what is so special about this group is: no matter how long you go without talking to one another, the moment you need them - they are there for you. When you don't have anyone in your every-day life who can understand what you're going through, they are there. When these friends tell you "Yeah I know how you feel." you know without a doubt that they really do. 

But there is pain and sadness that can come with having friends who are sick like you. You get so close to these people, they become your second family... and then they die. When I was just 11 years old, the first friend I made who had a terminal illness like me, died. No eleven year old should have to grieve the loss of a close friend. But so many of us do, and so many of us have. 

When you are chronically and/or terminal sick like my friends and I and you lose a friend that has fought for life just like you have - you grieve over the loss of a friend but you grieve for their family too. When I have lost a friend, I cry not just for my loss but for their families. I picture my family and how they'd deal with it if it had been me, and I can't help but cry for their parents, siblings, cousins and other family members. How would my family deal? How does any family deal with it? Then you cry for your friend. They had so many plans. They were so young. They could've grown up to be amazing people but life was unfairly taken away from them before they even had a chance to truly live. But then there are tears for yourself. Tears of fear. When they die, it is a sickening reminder that it could've been you. It is a reminder that someday, you are going to be the one people are crying over... and that that day may come a lot sooner than you'd like it to. 

This topic was sadly brought back to my attention last night while scrolling through Facebook only to find that a PHriend of mine had passed away. Angered, saddened and terrified, I ran into my mom's room with tears in my eyes to tell her. I had met this PHriend about six years ago at a PH Conference and although we did not communicate often, there was this wonderful bond between the two of us. 

I've written this post in loving memory of the warriors who have passed too soon. I was lucky enough to have met Sonny, Rebecca, Lauren, Jasmine, Amy, Olivia and Princess Faith before they left us. But to all of those who I never got to meet and to all the families out there who have lost a fighter - please know that they are missed and they are loved. 



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My Life As A Chronically
Ill Young Adult
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