I guess I didn’t do too good of a job at expressing my thoughts last night. I definitely did not mean that none of my family, friends, or Mike care about my pain, nor did I mean that none of your family, friends, and significant others don’t care about your pain. I get the feeling that I inadvertently hurt a few people’s feelings, so let me clarify.
It’s not like you can tell everyone you come into contact with that you are hurting. So, you wrap it up and walk around with it.
This is probably the only part of the post that is clear. I go through every day encountering many different people: coworkers, complete strangers, family, friends, and my Mike. (I’d throw him into the “family” or “friends” category, but saying he’s family just sounds gross when I think about it, and saying he’s one of my friends doesn’t even begin to cover it. Mike gets his own category.) There’s also my cat, who seems to be the most in tune to how I’m feeling — which is only because she has that sometimes creepy seventh sense. (I say “seventh sense” because we all know cats and dogs see ghosts.)
Now… where the hell was I? (See what happens when you try to clarify a post before eating dinner? My pizza needs to hurry…)
One of two things prevent me from telling anyone I don’t feel good (unless they ask):
- I don’t want to whine, or
- it would be inappropriate
I recently had a conversation with a friend whom I had just told about my mystery autoimmune disease. I’ve known him for years — going on nine years, to be exact — but in the past four years since my body started going haywire, I had never even mentioned that I was sick. Yet, we share things that most friends share with each other, like family problems, relationship problems, job problems, and so on. I felt really bad that I had never told him, and apologized. He asked why I had never mentioned it, and I said that I didn’t want to be a whiner.
He said something along the lines of, “You’re not a whiner. I think you’re really cool.”
I had to backtrack. “No, no. I didn’t think you would think I was a whiner. I just didn’t want to whine. I make no sense.”
And that’s exactly it — I make no sense. I don’t want to tell the people I’m close to that I’m in pain because I have some kind of macho “you can’t be weak” mentality toward myself. It’s not that I think anyone would think any less of me. It’s me, coming down on myself. Even stranger, no one has done anything to me to inspire this mentality. I can only speculate: denial? stubbornness? wanting to appear strong, even though I feel weak?
The second reason why I don’t say anything about my — I so hate to use this term, but here we are — illness is that it’s not always appropriate. Before I started working full-time, I would have bad pain days that would send me straight into tears. Now, those bad pain days — or even moments of excruciating pain — still make me tear up, but I hold it in because less than ten feet away from me are my coworkers. And then I would have to explain why I was whimpering. And then I would have to explain why I have this pain. And then I would have to explain why my doctors can’t figure out what’s wrong with me. And so on.
Having to explain all of that is exhausting. Plus, it again comes down to me wanting to appear normal.
So, no one truly knows what it’s like to live with my pain, except for me.
Every day is kind of a crazy circus of emotions regarding my autoimmune disease and chronic pain. For example, yesterday:
- 6:30am: My alarm went off and I got up out of bed without stiffness or pain. I got ready for work without limping around.
- 7:50am: I left for work still feeling pretty damn good. As I drove, I started to think that maybe I had overreacted, that it all hadn’t been that bad.
- By 10am, my left wrist was stiffening up and aching.
- Around 11am, or maybe even noon, my right hip started getting slammed with jolts of excruciating pain. I kept biting down on my fingers so that I didn’t scream.
- By the time I got home around 6pm (I had to work late to make up time for tomorrow’s doctor appointment), my feet were stiff and too swollen for my Nike sandals.
- By the time I went to bed, my lower back was aching like a female bunny after too much Woohoo*, and I was ready to punch someone.
Today was actually a relatively good day; I am a little stiff and swollen in some places, but not in any real pain. (I’d say about a 2 out of 10.)
Because I also have depression — which is now worse because of my autoimmune disease — I can honestly say that it’s the same when your pain is in your heart rather than your joints.
Anyway. I hope I’ve made my last post a little more clear.
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*Clearly I am having Sims withdrawals; woohoo is the Sims word for sex.
