Day 8 - IH Awareness Month

I’ve had quite a bit of trouble with this post. It isn’t because I didn’t have something to say but because I don’t want to offend people. Don’t get me wrong, I don’t have a problem with offending someone in general but I fear my post will offend people who had nothing but good intentions in what they were doing.

Through my IH and RA, I have grown to hate people asking me how I feel. Because it’s not like when you ask someone you walk up to you haven’t seen in awhile on the street. In a matter of seconds in public, I have to decide if someone is making small talk or is being sincere. And if sincere, how much do I really say? Does someone really want to know what my day is like?

I had a conversation with someone that I answered a few weeks ago honestly how I felt. I was in the second straight week of bad head pain and vision issues, the person went on for an hour about how they understand they once went for a whole week with a migraine and it was horrible. And the 30 minute mark, I wanted to scream because I have explained before that I don’t have a migraine but also because I realized when the topic turned to something else I missed it again. I attempted to explain the pain and the person was on small talk mode. I’m not trying to discount that person’s pain, because for them it is the most pain they experienced so that’s how they relate. But at a certain point it became how did I get in this conversation? Why didn’t I just say I’m fine?

If I’m having a really bad day or week and post online, I inevitably get the feel better soon or I just push forward that’s what you should do response. I know there isn’t any ill intent in saying it, but while I may get slightly better from something better happening now, I have things that are not curable so I won’t ever be 100% better.

Again, let me say, I know it’s said with the best of intentions. But realistically, I won’t ever be completely better. So when I post that I’m miserable, I am pretty miserable and usually have tried pushing through for at least a week. When I post, I realize I can’t push through this bad spot right then even with the best of intentions of others. When I post, I realize that my diseases are most likely worsening.

When I can’t commit to something or have to cancel plans...and people make me feel horrible about it. I try not to have to cancel because I try to not commit to anything in the future. Even my doctors appointments are pretty iffy. But if I have to cancel and then someone tells me about they just push through it and I should be able to do so. If I have committed to something and cancel...I am bad. I am not canceling to piss someone off. I am not canceling to bail out. when I was first diagnosed with RA, I tried to keep making plans and I learned I had to cancel too much. So now, I don’t make plans so I don’t have to cancel.

When I am really, really bad and am sitting laying there having been stuck in bed for a week and someone says feel better soon...for me it’s like someone dismissing the effects of these diseases on my life. Again...I repeat...I understand it’s done with the best of intentions. That’s why many times online I will just like or favorite a post and say nothing. Or send a short thanks a few hours later to a message.

I know the nice intention is there but in the moment when my brain feels like it’s splitting my skull in half, I can barely keep my double vision eyes open, it’s a reminder at my worst that my life isn't as it was and never will be again.

#IHAwarenessMonth #IH #findacureforih #RA #chronicillness