I hurt a lot of people with my last post on Facebook, which was a response to the person who hurt me initially (see here to read about it). In hindsight, perhaps that should have stayed private. But it needed to be said. I have had similar conversations with these people face-to-face several times before, and to no avail. The insults, ignorance, and confusion keep showing up no matter what action(s) I take.
Repeatedly, you tell me to "let you know when I feel bad so that you can leave me alone." However, when I do, I'm "complaining."
You tell me that I dwell on my illness and love to complain about it.
You claim to feel guilty when I express what I'm going through.
I am constantly told to "let it go," "stop thinking about it," and "get over it."
GUESS WHAT!
I do what you ask me to and tell you when I feel bad. I'M SO VERY SORRY THAT THAT HAPPENS TO BE ALL THE TIME!!!! WELCOME TO POTS! That does NOT mean that I'm complaining. I feel like I'm damned if I do, and damned if I don't. I do what I can for you when I am able... is that not enough?
YES, I DO have a blog about Dysautonomia, and YES, I DO talk about it on Facebook a lot. NEWSFLASH: So do LOTS of other people!! It's how we deal. You want me to raise awareness, so that's what I'm trying to do. It's not "dwelling on it" or "complaining." And trust me, the only thing we would LOVE is to NOT have Dysautonomia! I wouldn't wish this on my worst enemy - I do not "love" it. I also have a life outside of my illness, which - OH WAIT, DOUBLE NEWSFLASH - is being currently impaired by said illness!!!!! Driving, education, employment, MY OWN BODY... Everything is affected! But I do my best to get out and enjoy the things I DO love, when I can. You know this because you have to drive me everywhere (DUE TO THE FACT THAT PASSING OUT RANDOMLY IS A PROBLEM WHEN IT COMES TO DRIVING). Again, damned if I do, damned if I don't.
I KNOW that as a parent, you must be heart-broken at not being able to help your child. I am SO very sorry that you have to go through that. I WISH I could take away those guilty feelings, because THIS IS NOT YOUR FAULT!!! Please try to understand that, and in NO way am I blaming/ taking anything out on you!! I just need to be able to openly discuss my experiences, and if you won't listen to me for feeling "guilty," then I will discuss it elsewhere (please refer to the above paragraph).
I know that you want me to live my life ABOVE illness. TRUST ME, I'm getting there!! But the fact is, life is hard to live when you have such an unpredictable disorder! I have no CLUE what my body is going to do from one minute to the next, so if you find this annoying, I SYMPATHIZE WITH YOU. I wish you could come up with another way to phrase that, because when you say "get over it" or "let it go," I take you literally. Sorry, but I tend to get a little upset when you think I can feel better just by changing my attitude. And yes, attitude plays a MAJOR role in disease process. But sometimes, I need to be allowed to be upset. Don't compare me to your problems, or to anyone else's problems. Every body is unique, and anger is a natural reaction to chronic illness.
SO...
I acknowledge that I hurt you.
I cannot apologize ENOUGH.
I know my actions/ words were harsh and out of line.
I wish I could take it all back! Nothing hurts me more than knowing I hurt you.
I love you with ALL my heart!!
I realize that you have made countless sacrifices on my behalf, and that you do SO much for me!
I appreciate those sacrifices and ALL that you do for me, even when I act like I don't.
BUT...
I wish that you would acknowledge that you hurt me.
I wish that you would apologize like you want me to apologize - respect is a two-way street.
I wish you could see my perspective, and stop being so limited by how you think I ought to deal with my illness.
Even though I would NEVER wish this on anyone, I DO wish that you could experience a little bit of Dysautonomia for yourselves so that maybe you would understand where I'm coming from.
I'M SORRY!
I didn't mean to hurt you like I did.
I was in the wrong.
But to an extent, so were you.
Respect is a two-way street, regardless of your status in a parent/ child relationship.
We are all adults. Let's start behaving that way.
Can you forgive me?
Sydney
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