This post is going to be a major departure from the previous few, so if you wanted to read something with rainbows and unicorns, I suggest you try elsewhere.
Yesterday morning, I had to be at work at 8:30, which meant leaving at 8. Due to a lack of driver's license, I needed to depend on my father to get me there. Like always, he was running late - one of my biggest pet peeves. I made my feelings about being late for work VERY clear, and was immediately met with - and I quote - "Well, maybe you should get your own car and stop bitching at me." The world stopped for a second. I responded, rather disdainfully, with "Well, I would, except I tend to pass out randomly without warning." Another adult member of the household implored me to "Let that go!"
Now. If you're a regular reader, you know there are a few things I won't tolerate. One of those things is ignorant, intolerant people marginalizing my very real, chronic, debilitating illness. I WILL NOT TOLERATE THAT KIND OF DISRESPECT. I did nothing to deserve any of that. First of all, my CARDIOLOGIST told me to wait to drive... BECAUSE I PASS OUT!!!!!!!!!!! Yes, while seated too! Also, in order to buy my own car, I'm going to need a more stable, permanent job than the one I have working for a local photographer on select Saturdays during April/ the beginning of May. I have no bloody clue as to WHY this is such a difficult concept to understand.
I am consistently amazed and horrified at the ignorance I experience on a seemingly daily basis in this house. Sorry, but you really don't just let something like Dysautonomia go. Where the hell have you been for the past 5 years? Have you had your heads under rocks? I thought that maybe - just MAYBE - all the doctor's appointments; pamphlets; tests; and my own personal, biologically accurate explanations of what is going on would help you to "get it." You should be able to handle the fact that I do indeed have a serious illness after dealing with my heart defect for 19 years. I also would have thought that my father, having worked in mental health for 18 years and now teaching high school biology would have a basic understanding of how the body works, and that Dysautonomia is a legitimate thing. But obviously not. I thought that we were capable of higher comprehension, or at least listening to those who are.
How do you live with people who seem to refuse to want to live with you? Sorry my piss-poor health is an inconvenience to YOU. Guess I missed the memo about how selfish it is to be sick, and how I can just "get over it" and "let it go" anytime I want to. I was not aware that one could willingly prevent their nervous system from being converted to scar tissue (because that is what's happening, according to Dysautonomia research). If it's affecting your life so negatively, maybe you should think about how it feels for me. How it feels to not be able to trust my own body. How it feels to not be able to drive. How it feels to know there's not much I can do about it. How it feels to not know when or if it will end. How it feels to live like this at the age of 18. Again, maybe I'm being selfish. I guess I just don't understand why you, my parents, of ALL people, still just don't get it.
Unfortunately, these displays of utter insensitivity occur regularly; not just in my home, but in many homes of chronically/ invisibly ill people. I do not know why the people who are supposed to act as caregivers for us refuse to believe us, but it happens. And I pity those people. I pity them for their limited scope of understanding and comprehension. I pity them for being "inconvenienced" at something that apparently, does not exist or is not legitimate. I pity them because they only perpetuate a problem that we, the chronically/ invisibly ill, deal with too frequently. Perhaps I'm being unfair. Maybe I take things too personally, although I'm not sure how I'm supposed to take being told to "let my illness go" like it's some sort of stupid, silly grudge. Whatever the case, I'm not gonna take it anymore.
Sydney
From the Dysautonomia/ chronic illness community at large... WE'RE NOT GONNA TAKE IT!!
**WARNING**: If you can't handle 100+ expletives, do not watch the following video. I'm including it because 1) This post wasn't very funny and I feel the need to make up for it, and 2) Hearing Michael Shannon read a horrifically crude, psychotic email from a deranged sorority president is wonderful. I feel that it mirrors my internal dialogue that occurs during verbal assaults from ignorant morons. Screaming, expletives, and all. So, if you can handle it and won't leave rude comments for me for posting it, proceed and enjoy :)
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