Yeah, that previous post is really long. I apologize for that. It’s just so, well, hard to explain how I’m doing or what I’m going through.
Speaking of, my least favorite question in the world I get is “How are you?” I feel like I should actually address that conundrum here, if I can.
Most of the time when I get that question, I’m in public and the people don’t really know me. Surprisingly, when people look at me, they don’t see anything of what I’m going through. I’ve been in buckets of sharp pain, feeling like I’m about to faint or throw up, having my heart thudding strangely, or wanting to curl in a corner and hide from sheer panic–and someone will tell me that I look “so much better, and that I must be better now.” The first hundred times I heard this, I was utterly baffled. Okay, I’m still baffled. But I came to the conclusion that my illness is invisible 90% of the time. This makes explaining “how I feel” really awkward, because most of the time people don’t want a negative answer. They want to hear how great I feel. They don’t want me to prove them wrong or tell them how my looks are deceiving.
I do not feel great. In fact, my best days are your worst days, and my worst days are hell.
Granted, all of this makes the ability to understand my cryptic answers of “I’m okay” or “I’m fine” difficult to parse.
What I mean is:
- Your “How are you?” was just a greeting, you don’t actually want to know so I won’t use the last of my energy/spoons to find some way to explain how I actually am right now. Your casual words are actually a difficult task that I would rather not do.
- It’s too complicated to explain. I don’t want to explain. It’s too hard to try to find the words to capture everything just right. I’d rather tell you what I’m currently doing. That’s so much easier.
- Dwelling on what’s wrong has never made me feel better, (despite all the blogposts I’m trying to make about what’s wrong right now.)
- If I do tell you what I’m experiencing, you won’t believe me that I’m used to it, that this is my life. You will wince or cringe or treat me differently or stare. But for all your sympathy, you still won’t get what it’s like. I can see it in your eyes. That doesn’t make me feel better about my situation at all. So why do it?
- If I do tell you, it’s because I’m actually doing well enough to try to explain. However, because of how “awful” my answer sounds, you will automatically think that since I’ve told you a portion of what I’m going through, that this is ALL that I’m going through, or I must be having a terrible day. –No. If I told you in any detail, I’m having a “good day”, despite all evidence to the contrary. If I’m having a hell-day, why in the world would I be talking to you right now? I’d be in bed, just trying to survive another few seconds.
So, “okay” means “it’s hard, but I can do it, I’m surviving” and “I’d rather summarize than go into details”.
I’ll stop here. I really don’t want to make a series of blog-posts so long no one will read it, but it’s hard to explain in all its facets. It’s hard to explain what I mean and what I feel.