What scares me most (about being sick)

In the quest for answers, I got to the point I didn’t care what was wrong with me, as long as they knew what it was. Knowing is a very small, albeit very important part of effectively managing a disease. Even three years after my initial diagnosis, my symptoms weren’t manageable. They continued to get worse.

I spent a considerable amount of time in the hospital over the past 14 months, and to me, that place is hell on earth. The longer I was in, the more difficult it was to cope.

I had psych consults during all but one of my hospital stays. It made me question my sanity and everything I had done up until that point. I figured I was just a sick girl doing her best who happened to need a little help. My situation concerned them, so I was drilled, washed, dried on high. Big time shrinkage. The result was me being super depressed just in time to be discharged. Fuckers.

One of the psychiatrists got to me on day 13 as an inpatient. By then I was so sleep deprived I was hallucinating. It was difficult/impossible for me to pretend I wasn’t going stir crazy. He asked me “what’s the worst thing we could tell you” in the context of my illness.

“Are you afraid you’ll die?”

“No. I’m afraid I’ll live.”

As I let what I had said sink in, I got the strong sense that I obviously said the wrong thing to the wrong guy. Fuck, I’m busted now. Gone was the fake world of never ending s’mores, fresh air, puppies, and a straight Matt Bomer. I was bitch slapped by reality. Enter the waterworks.

He asked me to explain what I meant. Since I had already dug myself a nice big hole, I figured I may as well jump in.

“I’m afraid I’ll live a long life in the same state I’m in now, which is essentially purgatory. I’m alive, but I can’t live. Dying seems like a better alternative, so make me happy and tell me I’m terminal.”

It was something like that, anyhow. I’m afraid that the hope of “feeling better” that drives me, will eventually decay. (Un)Fortunately, life is terminal no matter what.

5 thoughts on “What scares me most (about being sick)

  1. I think hope is a little like faith — and that both of them can lead us away from reality. And our hopes change, don’t they? In the beginning, I hoped to cure the underlying cause of my pain. It took, like, a decade to change that hope into something more realistic. Then I had hope that the medical industry could help me manage the pain — that hope took decades to die.

    Now, my hopes are more realistic… and they’re more of a day-to-day sort of thing than a view for the future.

    However, misery loves company, so I’m happy to be miserable with you. 🙂

    Liked by 1 person

  2. When I read this I thought…she just put in words how I have felt. Not that I probably haven’t said it, heck I say everythig, but to read what I’ve felt so many times come out of someone else’s mouth, that hit me.
    I try so hard now to live in this moment, to not think about what the future may hold, to not think about the past. But sometimes I’ll sit back and think…I’ve been doing that for how long now, and things haven’t changed, if anything they’ve gotten worse. But I don’t end up in the hospital like you do. There is so much I don’t have to go through….I think those things, yet I tell people every day to never compare your pain to another’s, you don’t know. People are different. What I experience is mine, I can’t compare it to yours. I live with the world in motion. I go from my bed to the chair every day. Gosh, I’ve started to ramble. I just wanted to say, you aren’t alone in thinking like that sometimes. It isn’t always there, but sometimes, yeah….I really get it.

    Liked by 1 person

    • So very true. My sister has some food allergies, which she talks about sometimes, but it doesn’t take her long to say “well, it’s nothing compared to what you go through.”

      What happens to me has nothing to do with her difficulties, and her experience with them. It could be as bad to her as crohn’s is to me.

      I remember a random GI doctor last year who told me other people are worse off, like me being there was an inconvenience to her. It didn’t hit me right away as being a bad thing, because I’ve thought the very same thing. My mother was with me at the appointment and said she wasn’t at all impressed with the doctor and wanted to kick her in the shin when she said that. Haha…oh, Mom.


  3. Pingback: Facts: Thinking Is Not Sleeping, Death Is Not Temporary | Polishing Dookie

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