Life With PH


From day one Pulmonary Hypertension patients are never “believed”. We are doubted, misunderstood, misdiagnosed and called liars. Why you ask? Because our disease is growing and showing internally where no one can see it. Year after year high school friends, family, teachers and doctors wouldn’t think past something simple like asthma because I looked perfectly fine and I was a teenager. After my diagnosis people were just flabbergasted at what was happening to me but all I could do was smile and say, “told ya.” I was very happy when I was diagnosed because even after a while, the doubting got to me. I knew something was wrong but maybe I needed to be like everyone else. You’d think that actually being diagnosed, medication, doctors and surgeries would actually change these doubts people have? Oh lord y’all. It doesn’t even stop here.


I don’t like to flaunt my disease and I’m not the type that wants anybody and everybody to know. If it comes up in conversation then I’ll casually explain it, but people look at me like I’m stupid. I don’t blame them, and I don’t blame them for not being able to wrap their minds around it. I look like a perfectly normal 20-year-old to anyone I meet. What takes this disbelief to the next level are people who badmouth or refuse to acknowledge exactly what we have. And if you’re one of those people, I’m about to take you OUT, jack. Pulmonary Hypertension is very existent. It knows no age, race or gender and is doing it’s best to take lives. It’s continuing to affect children as well as adults and over half the problem are “non-believers” who refuse to believe anything is wrong. And the fact that someone would bad mouth or make fun of it is even worse. We can’t help what we have, we didn’t choose it but we are choosing to fight it and treat it. YOU have a choice…acknowledge this invisible disease for what it is and what it’s doing or continue to be a non believer. It is here, we are PHighting it and we’ve wrapped our minds around it. It’s time for you to wrap your mind around it and accept it too.

As for us, we just keep going. I would love to keep explaining on why you should take PH seriously, but my breath is precious. 🙂 Non believers are a waste of time. We are lucky for our diagnosis because someone finally chose to listen and see us for what and who we are and that is who deserves our time and attention. No more energy should be wasted on people who have never “believed.” We believe and feel it and the most important people in our lives believe and feel it too. That is all that matters anymore. Just keep PHighting. 🙂



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