Soms is dit so moeilik om vir iemand te beskryf hoe jy voel. Suzanne Kenner, 'n mede PHer se woorde is in die kol.
Just something to help others understand how we may be feeling at times.
"Having Pulmonary Hypertension means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up dead or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. PH has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is PH I am angry with, not you.
Please understand that having PH doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work, my family and friends etc, and most of the time I'd still like to hear you talk about yours too.
Please don't assume you know what is best for me. PH has affected my lungs and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go out with everyone else, but it hurts when you exclude me. Maybe it's just that I can't do what everyone else can.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain. Even on a good day I feel like you do when you run a mile. Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (PH is a rare disease) even if I was only diagnosed recently, I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. There is NO cure for PH."
