Invisibility; one of Pulmonary hypertension’s biggest, and most irritating problems. I have three types of people in my life. The people who are there when something is up, understand, and are doing their best at supporting me. The people who are attempting to learn, and understand this confusing disease, then last, the people who have heard it, seen it, probably don’t understand, and “don’t have time to.” We are human, and tend to do stupid human things like judge others on their outward appearance. Ahh, what a fatal mistake. Doctors judged me on my outward appearance for years, so long in fact that when I was eighteen they didn’t know how much longer I was going to live. Yet, I looked perfectly healthy. I may look fine, and act fine, but PH is still an extremely fatal disease. Judging people by their appearances is not just a social flaw, but a life threatening mistake. I can’t even count on both of my hands how many children, just children, died from PH this year, and how many people are in the hospital PHighting it right now. Its ridiculous. So how much longer are you going to think that this is “no big deal?”
With that being said, I hear patients talk all the time that they wish their best friends, significant other, parents, and sisters brothers cousin would understand. Remember PH’ers, they are not going to understand, and really it’s not their job to. Their job is to be supportive towards you. If they are trying to understand, then bonus points for them. Support is really the main key in lifting a patient’s spirits, not understanding. I’ve made a post like this before, but here I go again with just a little updated refresher!
THE DO’S AND DONT’S FOR THE PATIENT IN YOUR LIFE
When something happens, a new diagnosis, loss of a family member, bad test result, we tend to flock to that person, and back them into a corner for a response. Wait until the crowd dies down a little, and for a quiet moment to show your support in a non-harsh way.
–Don’t Ignore It
“Everyone’s texting them, so it makes no difference if I do.” Really, I mean really? What animal taught you to think that way?
–Do Send a Card
The art of the hand written note, or letter, is pretty much lost. We have social media, texting, Facebook cards, and everything else that substitutes it. When someone receives a card, it shows that you went out of your way to sit down, and write them. It’s a nice thought that few go through with.
–Do Respect Privacy
It’s not everyone’s business that their cancer, disease, or whatever is back, and got worse. Some of us patients are extroverts, and vent when something happens, and others invest privately in a few people. Respect that if you are one of the few chosen. My rule is, if they’ve posted on social media about it, then its ok for me to share with who I think I need to.
–Don’t Offer Fake Support
There is a difference in real support, and “support.” For example, the girlfriend in the movie 50/50 wouldn’t go to chemo with her boyfriend, because she didn’t want to mix with those “bad vibes.” So she only drove him to treatment. Horrible, horrible, horrible girlfriend. Real support consists of hospital stays, visits, knowing exactly what is going on, checking up no matter what time it is, going to events, helping at events, and not leaving the patient even questioning if you’ll be there.
–Don’t Make It a Big Deal
Don’t freak out, make it big, and exaggerate everything. It makes it hard on the patient when the disease becomes the rock. It’s just something that happened to us. When you constantly remind us of what flaw we have, its annoying.
–But DO Make It a Big Deal
At the same time, don’t blow it off. For me, my “diagnosis anniversary” is a big deal. When you blow that off, that can set me off. When a conference, meeting, 5K Marathon, or support group meeting is no big deal to you, you are kind of failing, and being an asshole. It’s a tricky balance of knowing what to make big, and when to do it.
–Don’t Exhaust Yourself
We aren’t asking for the royal treatment by any means. This friendship, like any, is different and has its quirks. It should be no big deal to you. You can still make all the difficult stuff just as much fun, and easy to breeze through. Just like any relationship, it takes two people, and appreciation to make it work.
This by far isn’t everything, however, I’m on a series of different pain medications after surgery this week, and I’m having a little trouble focusing! haha! Thank you to every person who texted, prayed, checked on me, and showed true support. It means more than you know! Now, let’s have a fantastic Monday. Check out the NEW CONTEST UNDER THE CONTEST TAB!! Its easy, and exciting! Also, Song Of The Week is BAAAAAAACK! Enjoy the new hit single, Cheap Sunglasses by RAC.