I Just Might Be Done Talking.

So today marks both Pulmonary Hypertension Awareness Month AND Native American Heritage month. If you’re me then you know November already sounds exhausting. Living with a disease can wear you out seeing as how it sucks the life out of your body. However, I think what is more exhausting are the people who refuse to learn, expand their minds, and actually start acknowledging such invisible diseases. Like, truly acknowledge.

A lot of you know that I somewhat retired from writing about PH simply because I felt I had fulfilled my duty. I literally had nothing else, and no inspiration left when it came to writing. When I accepted the PHA’s Young Adult Citizen award it all just somewhat felt complete, and I wanted to begin tackling other issues. To this day when I get inspired to write about PH I feel as though just the keyboard gets heavier. I honestly just feel as though when I talk about my disease to others that I’m holding conversation with a mannequin.

In today’s world we exist on terms with a sense of entitlement. If anyone gets offended by anything then it’s in our Newsfeed Facebook Trending Topics section, and everyone in the comments is participating in a keyboard war. I also feel that because of dangerous things that keep unfolding in America because of times progressing that we are all in a state of mind called “survival” and “worry about me, and my point of views only.” At least it seems that way. Most people are not shocked to find out that I am extremely democratic, and liberal. However when you say that you get called a “liberal dumbass, needy bitch, living off the government” and what ever else people can throw in your face. I get it, its political views which you are not supposed to discuss. While I may support liberal standpoints, I overall just kind of want to start a campaign that’s called, “Educate people, and let them make their own life decisions.” I guess you could say that’s what I stand for.

truth

So, why am I talking about politics when I started off with Pulmonary Hypertension, and Native American Heritage Awareness? Because these months in my eyes are almost useless. Don’t get offended, I still do everything I can. But so many people do not listen, and do not want to listen these days. When we say, “I have a rare disease, and I almost died because there wasn’t enough awareness” people will respond with, “Oh, wow.” You really can’t shock people with the facts anymore. But they kind of don’t want your story clogging their newsfeed, instagram, and don’t want to make time for you on published articles. When you try to educate people on why you believe in Pro-choice for the safety of Pulmonary Hypertension patients who are women who cannot carry a child, or be on birth control, they literally don’t listen. Their logic’s are firmly implanted, and they type back about how despite you wanting to adopt, or do surrogacy that you are a murderer. These days I feel like everyone sits on their own sort of pedestal…and they are not willing to open their mind. To listen to someone, to truly want to understand what they are saying, to truly want to feel what they are feeling you not only have to open your ears, but every part of your mind that has the preconceived notion that they are wrong. Actually listening to people is a wonderful, and eye opening thing.

Basically, I think when it comes to raising awareness about a disease we are not only trying to give our disease a voice, but also fighting against a set mentality among most people. I’m not saying it’s one political group, or certain types, but literally everyone. I know (seriously, I fucking know) all of you get so mad about how much I post about abortion, and politics. But we have to understand that government decisions affect how patients live…or whether they don’t. Think about a woman with Pulmonary Hypertension living in a country where abortion is outlawed, and she were to become pregnant? How fair, and safe is that? Exactly. When we fight for awareness, we are not just trying to get into people’s ears, but their minds. We truly have to completely educate them. It’s exhausting, and it feels almost impossible.

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I will continue to write a few articles this month on Pulmonary Hypertension. And I really hope that instead of just liking the post, that you are reading it, understanding it, and contemplating major things now. That’s what awareness has to do; it has to move mountains in people’s minds so that they are made aware, and help us fight. We have a lot to overcome. I guess I’m not trying to be negative; I’m just unloading some very heavy, and prevalent thoughts when it comes to November.

Song of the Week is Heart Shaped Box by Nirvana. Anyone else feel like screaming this?

-haley.

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