This week has been…interesting. I finally stopped taking my pain, and nausea pills because they were making me feel crazy. In the meantime, my short of breath has gotten worse, and I’ve been wearing my oxygen! Good grief I hope things improve soon.
Anyways, on top of this dreary week, I wanted to bring up a subject that might be a thorn in some people’s paw. However, view it as me taking the thorn out of your paw, and helping you. It applies to everyone, and its a fine line we as patients walk everyday. But this is a great way to keep yourself in check.
Your disease is not a pity party theme.
There, I said it. We do feel as though we should gain respect from others, and they should notice what we go through. If they do, then they do. Its our job as awareness raisers to grab their attention, and show them, in a unique way, what we deal with, how sucky it is, and why they need to know. Thats just good business. Thats turning your disease into magic, and doing what you’re supposed to do with it, or what you feel called to do with it. Some people have PH, don’t care that they have it, and don’t want to make a fuss. I respect that. They don’t feel called to awareness raise. Then they are some who are making people want to slam the door in their face. What could we do that is turning people off? How could they not want to help a poor person who can’t pay astronomical medical bills, and who can hardly move fast, and doesn’t sleep, and– see? I’m doing it right there. It’s the wrong way to handle all of it.
Pulmonary Hypertension is awful. Pulmonary Hypertension is scary. It’s scary that from day-to-day you have to wonder whats happening inside your own body, and if it’ll make up its fickle mind to live. It’s scary to look so normal, and to feel so normal that the public doesn’t recognize your disease, and before you know it, you don’t either. Pulmonary Hypertension is a big nasty invisible monster, and our natural reaction is to get un-happy. But the fact is, we all have enough negativity in our life. Sure we can bitch, and moan, and post awful things, but people are drawn to positivity. End of story. They like seeing things that make them happy. They like seeing realistic things as well.
So, what could I be doing wrong? You aren’t doing anything wrong. How could I be portraying my disease? Now, there’s a question. I can’t speak for anyone else, but I am drawn to strength. Pulling your boot straps up, putting your cannula in your nose, and trucking forward. I hate pity parties, any kind for that matter. I don’t care if you have the worst of the worst disease, and the worst of the worst situation. No one will be in attendance at a pity party, because quite frankly, its stupid. People see that, and they scroll right on. Portraying strength, showing strength when you feel like you have nothing else to give? People will read that. Portraying the reality, and how you’re are dealing with it somewhat positively? People will support that, support you, read that, love that, and anything else.
Dont portray Pulmonary Hypertension as this big sad monster inhibiting your life, and your depressed, and its awful, and your life sucks, and you can’t pay the bills…no one likes that. No one wants to support PH. Soon they tag PH with whiny in their mind. Show them facts, and show them strength while remembering, and not forgetting what you deal with. By doing this, you will in turn find your own strength, and move forward.