I'm Aware That I'm Rare: Haley Lynn

Diagnosed at eighteen, Haley has made it a lifetime goal to educate on her rare lung disease, pulmonary hypertension, and often ignored brain and emotional health issues accompanied with lasting injuries and diseases. Haley is also striving toward her goal of becoming a published author.  She shares her rare journey through her blog: phenomenalhaley.com. Some of her awareness artwork is also featured on the phaware365 mobile app (www.phaware.global/phaware365).

Transcript:

I’m Haley Lynn and I live in New Mexico but I’m originally from Texas.

I’m a patient myself. I was diagnosed in 2010. I guess like two years into my diagnosis kind of started digging online and then found the PH communities. I started my blog. That’s how I really got involved and connected with people as I was writing. I had my first I guess the onset symptoms at a gym class in sixth grade. I was 11 years old. After that, kind of what I thought was an asthma attack, I had symptoms for seven years after. It got so bad. My senior year in high school I was 17, I could not walk up a flight of stairs. I was passing out all the time. That’s when my dad was like, “Yeah, there’s something wrong.”

I celebrated my 18th birthday and two weeks later I was finally diagnosed. My dad hadn’t really seen exactly what was going on because it was mainly happening at school when I was having to climb all these stairs, and get to class, and be in a rush and whatnot. Finally, we were hanging out one day and we had to park in a parking lot and walk into this huge store. By the time I got fully into the entrance of the store, I had to sit down. My dad’s a paramedic so he was taking my heart rate and listening to me. That really showed him that I wasn’t able to breathe at all. That’s what kind of did him in. I guess that was the final straw. That kind of sent him over the edge, seeing that for the first time.

For him to see that, he was just flabbergasted. He thought for sure that’s when we needed to go see a doctor. He got me into a cardiologist immediately, which was actually a fight. They weren’t actually going to take me at first because I wasn’t 18. They were like, “No.” I was about to turn 18 and they were like, “That’s too young. She needs to go see a regular doctor. She doesn’t need to come to cardiology.” My dad fought it and we got in.

The first thing that kind of showed them something was way wrong was my EKG and then an oxygen saturation. I think it was sitting 83%, if I remember correctly. That was when the cardiologist was like, “Oh my gosh, something’s majorly wrong.” Actually, when the doctor did say that and he was like, “Something’s very wrong with you.” I was like, “Finally.” I just smiled because I mean this had been going on for so long. My parents had thought it was asthma. I would go to the doctors and they would say it’s just asthma. But I was like, “How does any of these other people that I’ve met with asthma, how do they walk around every day and not be in this much pain? I don’t get it. They’re fine with these inhalers and stuff.” It wasn’t working for me.

It was a sense of relief, because it was like, “Oh, finally. I’m gonna be getting to feel better hopefully.” That initial … I don’t know, I was legitimately okay with knowing something was wrong. Finally, about two years later, that’s when I started feeling okay and adjusting to a new normal. That’s when I had created my blog. I kind of was … I guess you could say like the denial phase. That was kind of part of it. I was already having to make adjustments in my life. I just wanted it to take up the smallest amount of time. I didn’t want to be involved, I didn’t want anybody to really know I had it. I was just trying to take my pills and go about my business and move along with normal life.

It ends up leaking out into your normal life and you just kind of have to be like, “Okay, it’s here. I need to acknowledge it. If I want to write about it or I want to talk to other people, it’s okay. It’s not going to permeate this idea of what normal is. It’s just … it’s life.” I had always been a writer and I actually hadn’t written in a very long time. I hadn’t been writing at all. I just kind of wanted to tell people like what it was.

My first couple of articles or whatever that I wrote on my blog were just things that I do in spite of PH or like how to cover up your swollen ankles or things like that. It was very like, “This is kind of what my life entails and what I do every day.” Also, very therapeutic to be able to put thoughts that I had had for going on two years now actually write them out. It gave me something to write about, which was another awesome thing.

I had a lot of people reach out, actually, through email and whatnot and commenting on the blog and meeting other people with PH. Meeting people with all sorts of rare diseases. Sometimes when I wrote, I tried not to make it so PH, I tried to keep it very broad.  I had met a lot of different people with different things going on. Then, of course, a lot of PH people. It was very cool though to actually meet other people. I was like, “Wow, people are actually reading this?” It was insane.

The responses were great, absolutely. Overwhelming sometimes but great. You’re hearing all these people’s stories. It does get exhausting. It’s like, wow, so many people are suffering from this, it’s insane. You get to know people’s personal stories and it’s overwhelming in a very good way sometimes. Definitely have a lot of connections with females my own age, yeah. There are some great girls, other writers, poets, artists. It’s insane the amount of people I’ve met that are around my age. Just being able to actually discuss issues that are in our age category that are affecting us currently. It’s kind of mind blowing. It’s horrible, but it is a relief that somebody else kind of knows what you’re currently dealing with because of the phase you’re in.

A lot of older female friends that are like moms, that are absolutely fabulous that are living with this disease and they’ve had kids. I just think that’s amazing in itself. Of course, a lot of kiddos and their parents, that’s another great connection that I’ve made. I definitely feel like kind of a teacher, that’s my teacher vibe coming out. Being able to meet these kiddos that have PH and then being friends with their parents too. That’s really cool.

I wrote for so many years about dealing with an invisible illness and being able to tuck it away. Now, it’s very much turning itself inside out. Now, I have a tube and a little pump everywhere I go. If I wear a v-neck, people can see my Hickman line and are asking questions. It’s very much so, now it’s becoming an external illness, too. Getting used to that and the mixing, it’s intense. Getting used to that change of now it’s kind of on the outside of me. You don’t have that ability to be like, “Oh, I’m fine.” You don’t have to explain, nobody asks. Now, it’s here. It’s been an adjustment ever since I got out of the hospital. I’m going on a little over a month now. It’s definitely brand new.

I’m learning more about the phases of chronic illness and crisis and how much we go in and out of them. My writing has kind of been proof of that. I look back. At one point I was so up and I felt great and very positive and very okay with my disease. Now, I can watch my writing and I can see the roller coaster come back down. I’m going back into a crisis phase or an angry phase. I’ve definitely been able to see that. I never thought stages of grief and all that. I’m just like, “Whatever.” I’ve taken psychology and studied all that, but to be able to see yourself go through it. The evidence is so there since I put it all out.

Learning that, being able to know when I’m coming up on a phase or know what I’m dealing with. That’s what I’ve really learned about myself is that the stages of dealing with a chronic illness, the mental battles are very real. I am that kind of a person where I think people need to see that. That’s something else that I’ve learned through my own writing is how important mental illness is to be dealing with a chronic illness. I can’t get over it.

I really didn’t think that’d be my focus. I had never even thought about it. Through writing and through years of putting my writing down and being able to see my patterns, it’s amazing how much I’ve turned my focus to mental illness and how it impacts my writing and what phases we go through. They’re very real and they impact us. That’s definitely something I’ve learned about myself is how important that is to me.

I’m Haley Lynn and I’m aware that I’m rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at phaware.global/podcast. Learn more about pulmonary hypertension at phaware.global. #phaware