Oh lord y’all, I’m so sorry I was gone forever AND we missed Fashion Friday! I got suuuuper sick and I’m in the process of working past it but I’m much better! Moving on!!
So lately I’ve been on the topic of support and families and I’ve often wondered what it would be like to deal with someone who had PH in my life, and how I would treat them based on what I would want or what us patients need. As a family member, close friend or loved one, what should you be doing for that person with PH in your life? Well lets see…
WE NEED SUPPORT.
We don’t need your half-hearted call once every couple of weeks to check on our physical status support. We need your “all in” support or you can consider yourself “all out”. Support means almost daily communication, not of just our disease and what we deal with but maybe our lives too? We need emotional and mental support just like everyone else. And we can say we don’t need anyone at serious appointments or hospitals, but we do. Also, lets not forget financial support if we aren’t already independent. Having a disease is to say the least, EXPENSIVE. I can’t even name all the things I’ve had done to me and how much we spend a month or rack up with collectors. It’s a burden and we realize that so it is beyond difficult. Get use to that and get use to hearing us complain about it. Be supportive. The end.
WE ARE NOT BREAKABLE
We are not the porcelain doll that you think is going to break every second. That just gets annoying! Yes we like to go out and live our lives just like anyone else and NO we wont die when we pick a bowling ball up. We are (or should) be very aware of what we are capable of and we will let you know if its going too far. But until you see us huffing and puffing, stop asking if we’re dying. It’s a constant reminder that maybe you just aren’t comfortable with our body yet, and we’re trying to get use to our own bodies too.
DO NOT REMIND US OF OUR IN-CAPABILITIES
“Oh, but you can’t do that!” is a trigger word for me wanting to slap you. I know what I can and cannot do, and I’ll be sure to tug your sleeve when I have a concern. Until then, if I agree to go to the gym with friends stop acting like it’s the top story on the news channel. When you constantly remind someone of what they can’t do or what they are incapable of, you are putting more of a divider there than there already is between them and common life. If you have a concern you can simply say, “Let us know if it’s too much.” You’re expressing your concern yet you aren’t shooting us down. Re-think your words.
GIVE US ROOM TO BREATHE
I don’t know about y’all, but I can only handle so many people at one time questioning my health and things like so. When I’m in the hospital I’m ok with my dad and a good friend, but when you’ve brought everyone into the room and briefed everyone on the situation it gets to be too much. Don’t bring all your friends in to see our miracle recovery, and don’t tell everyone what we’re going through. We can’t stand to be introduced as the diseased person, and some of us just aren’t ok with everyone knowing our story. Step back and let us control that part. Stop adding pressure to our situation and let us “breathe.”
As a loved one you are responsible for treatment and recovery too. We cant accept ourselves if you’re a daily reminder of how different, breakable, incapable and smothered we are. Back up and let us be human and let us heal in our own ways. It’s your job to be loving and gentle not loud and over bearing. For that person in your life dealing with this, you should not be breaking these rules. And if you have family breaking these rules, all you need is distance. Dont let you or a loved one start breaking under your pressure, we are already broken in a lot of different ways.