# Neeley Heilman

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Hello and welcome to another podcast of Putting A Face with Disability. Today we have Neeley Hielman. Yes, there is a relationship to me. This is my teenage daughter who's no longer a young one. She's actually 18 now, and going to share with us a little bit about some of the diagnoses we talked about this week of immune deficiencies among other diagnoses. I'd like to turn it over to Neeley. Neeley, could you introduce yourself to everyone and tell us a little bit about yourself and what your actual diagnoses are? Hello, my name is Neeley Hielman. I am Dr. Hielman's daughter. I am diagnosed with a primary immunodeficiency postural orthostatic tachycardia syndrome, otherwise known as POTS and EDS or Ehlers-Danlos syndrome. But I'm a lot more than just my diagnoses. I love to run. I love to lift weights. I love to go out with friends. I'm pretty much just like everyone else as a cliche as I sounds. [LAUGHS] I have a cat named Atticus, that's my best friend. And I plan on attending UConn in the fall. UConn, exciting moving to Connecticut. Yeah, it's going to be a big change for sure. We'll be talking about that in just a second. Part of one of the reasons we're doing the podcast is for students and for people to understand some of the other aspects of disabilities that's beyond the physical aspect. Could you share a little bit about how your disability affects your daily life? Maybe things like your social life or your academics, anything like that. Throughout high school, I've struggled a lot maintaining friendships because due to the invisibility of my illness. A lot of people see me and they don't think, oh, she has a disability or, oh, she struggles every day to just go to class and to do things that are really easy for everyone else. And so I've had a lot of friends that don't believe me, and they don't believe that my illness is real. And if I have to cancel on them because I'm having a bad POTS day or I had an infusion last night and I had a reaction, they're going to think I'd just bailing on them. So it's been hard to find people to be friends with me that have the maturity to understand the kind of disabilities that I have. And honestly, it's just a lot more convenient for them to have friends who just don't have disabilities. So I've had to find people that either have disabilities like me or people who just have a better perspective on life and can understand that everyone has their own problems and everyone has their own experience in life. And that's how it's affected me at school. Also, I've done a lot of sports growing up. And I played soccer and I swam, and I would have practices where I would tell my friends I'm like, this is just a really hard set, I can't do this anymore. And they would say, just push it, just push it, you're fine, which is fine for everyone else. But it's hard to listen to your body when you have friends telling you to like-- and they think it's in your best interest just to help you get better, but a lot of people just don't understand athletically and socially. And when you were doing those sets and you'd push yourself because that's what everybody else is doing or your coach is doing and they didn't understand what your body was feeling inside. Can you explain what happened in a couple of times when you did push yourself? So a few times when I did push myself, I ended up having some sort of swelling on my heart. And I passed out after I got out of the pool in the bathroom and no one found me for like 15 minutes. And that