This week I sat down to start to write my post recapping the last 6 months. As you have probably seen on my ticker, today marks exactly 6 months from the day I started this blog. I had some reflective things I wanted to write about, but then some other stuff happened and now I just really want to talk about those things instead.
I feel like this deserves a warning….it’s not pretty….and I am in a rather…. how shall I put this…mmmmm…. mouthy mood. Yea… we’ll go with mouthy.
If you’re still reading, and you have a tendency to be offended by people talking about you, stop reading now.
Like right now…
Okay…. hold on to your cookies…
I guess I always knew that this pain thing would make it a bit more difficult to maneuver relationships. I expected that some people wouldn’t understand, or question what it was I was experiencing. Early on this was obvious when I would seek council from medical providers who had never heard of PCS until I came along. I could see the confusion on the faces of cousins or in laws when I would try to explain why our family hasn’t been around as much. It’s not like telling someone you have Cancer or MS or even a broken foot. It’s this weird, rarely heard of thing that sounds a little like phooey. Unless, you are me; in which case it is very real, and very frustrating, and very, very lonely.
I don’t really like to tell everyone what’s going on with me, for the very reason stated above-it’s weird, and not widely understood. Beyond that, I don’t want people to think of illness or pain when they think of me I just want them to think of me. Does this make sense? I suppose though, that my lack of “proof”, or willingness to openly say that I am in pain (facial expressions, posture, crying, whining, I don’t know what else…) makes it harder to believe that I actually am hurting.
Recently, I requested the copies of my medical records from the two pain specialists I saw in 2012. I was a little nervous while I waited to get the copies of the physician’s notes, but I wanted to know what kind of doctor gossip was floating around about me out there in Doctor Land.
Doctors can be assholes. (This is where that whole “stop reading now” thing starts to come into play..it’s not too late….stop now if you can’t hang because doctors aren’t the only ones) I have never been so disappointed in someone I was trusting to help me before in my life. Turns out, if you tell a doctor that you are familiar with his preferred treatment method, and you don’t feel safe participating in it, they will mark you with the medical community’s equivalent of a pirate’s black dot. Not only did this doctor leave out all of the nasty things he said to me from his case notes, he made up a few choice things about me as well.
This, my friends, has never -and never will be- acceptable. (Those of you who know me personally are laughing right now I just know it.) Please believe that I am a resourceful, intelligent, and (most importantly) motivated woman. A woman, who really doesn’t like it when people (excuse my mouth) talk shit. This is exactly what this man has done. It isn’t even just that he said some things that weren’t very nice, he is damaging my ability to seek care as a chronic pain patient. And now, my friends, he is going down. (gives a mischievous grin.)
It’s easy to get angry, and fight back when it is a doctor who has known you for all of 20 minutes saying that they don’t really believe you. It is a completely different ball game when it is the people close to you that don’t believe you.
It feels like…… it feels like…. it feels like betrayal.
Have you ever been cheated on by a boy/girlfriend or spouse? It feels like that. It makes you question everything about your relationship with that person. Pain is so personal, so private, so yours that to have someone who is so close to you say they don’t really get it is like being stabbed in the back while they look you in the face.
I am caught somewhere between “what can I do to help you ‘get it’?” and “What the hell is wrong with you?” Part of me wants to say that I understand why some people might not really think I am experiencing pain because I really don’t act like it. But then, how am I supposed to act? Furthermore, why should I have to prove anything to anyone? If you love me, and I am important to you, then you believe me. That’s all. That’s it. End of story.
Sometimes, well actually a lot of the time, I wish people could climb inside my body for a day to understand what this is like. But then, do you really need to experience it to believe it? I mean, is the fact that I have given up so many things not enough proof for you? There’s that stupid word “proof” again which should be reserved for the asshole doctor who thinks I am an addict and not my friends who know me. Who know who I am, and what I have been dealing with for the past 3 years. Those people shouldn’t need “proof”.
And okay, I will admit that maybe some of you haven’t been privy to most of the doctor visits or procedures, but that doesn’t really mean anything except that I didn’t tell you. But when I, or The Hubs tells you that I (or we) can’t make something because it’s a bad day. Then that’s the only reason we can’t make something. Not because we don’t like you, or because we want to hang out with someone else instead. It means just what it is, that I am having a bad day, and I need my husband to be with me.
I could ask you to put yourself in my shoes, or try to teach you about my condition. I could try and help you find a comparable experience in your life, but when I get right down to it- this really isn’t my problem. It’s yours if you can’t see that I am not trying to hurt you, I am trying to take care of me.
And maybe you don’t like it, or understand it but you know what? If you love me and my family you will respect it.
Like I said, I knew that this was going to change the way things were in my life, and it wasn’t long before I started to see who my friends were really, and who wasn’t. I guess I thought I had weeded out most of the ‘fair weathered friends’ but it seems like a few of them could handle a lot more rain than the others.
Considering they’ve put up with so much rain already maybe I should be more willing to forgive and forget and move on through the storm with them. Maybe I should try to step out of myself and consider what this has been like for them. . . .
. . . .Maybe, but right now I really don’t want to share my umbrella.