A surprising amount of things change after you find out you've got a serious illness. Things you wouldn't even expect. I know I touched on this in my "1 Year!" post, but it's been bothering me. I wasn't sure I wanted to do this, but I feel like it's relevant to PKD.
The things I'm talking about are purely psychological. Firstly, the headache fear. They've actually studied this. 10% - 40% of us have intracranial aneurysms so, when we get headaches, there is a sense of fear that we're having a bleed. I've learned to get over this fear as I've learned that the bleeding causes an unprecedented type of headache usually accompanied by nausea, vomiting, or unconsciousness. But still, headaches just aren't the same anymore.
That's the most frivolous change. Mostly my personality has been affected, and I hate it. I think it might be because I'm less anxious (believe it), but I say what I think more. Sometimes this is a good thing, but most of the time, it's not. Some of the irrational things my brain comes up with just aren't acceptable, so I've been able to monitor what comes out of my mouth. Not that I wasn't honest before, I just wasn't mean before. I've gotten way more mean, bitter, angry, impatient, self-absorbed, and depressed. So my irrational thoughts beforehand are even more cynical, pessimistic, and crazy than before. And the gates are open!
It's frustrating. I hate meeting new people because it's not the real me. I hate that some people I really care about only knew me for a year before my diagnosis and that maybe they think this is who I am. I can't control my new feelings. My special parchment states that I have a pure heart, but it doesn't feel like it anymore. Like I'm half of what I should be.
On top of that, it just feels like no one cares. People, family even, forget that I have this. They forget the name of it. One family member compared it to PCOS, and thinks a transplant is a cure-all. It's clear she has no idea what PKD is. It seems like none of them do sometimes. Which is another thing. Why has no one been tested yet? Why has no one so much as Google'd this? It's selfish, but I feel like it's not being taken seriously. So it's like I'm rotting away (personality-wise, mentally, and physically) and no one even notices. Or maybe they just want me to get over it. I do too. I really do.
I kind of understand though. Having this makes it hard to get life insurance. It's a bit scary. And, as is apparent, it's life-altering at the least. Maybe they don't want to turn into neurotic, mean people. Anyway, I just wish I could tell everyone that this isn't me, like wearing a sign or something, but then it's an excuse. I truly hope I'll get over this sometime but that, in the meantime, people will forgive me.
