Some of these things are universal, some are just about me.
I dislike those "Ten Things You Should Never Say To ..." articles. That's not what this is. This is just me sharing some things that I didn't know three years ago. Learning these things has helped me to be more understanding of people with illness and injury, and especially those with invisible illnesses.
And yes, it bugs me that there are twelve items instead of ten.
What Three Years of Chronic Pain has Taught Me
1) Pain is awkward. It's awkward being around someone in pain. It creates a level of intimacy that most relationships aren't ready for. It breaks people down and makes them more honest. It's also awkward being the one in pain, for the same reasons, and because you know that you're making those around you uncomfortable.
2) No one wants honesty. Friends, family, coworkers, employers, and even doctors all really want to hear "Yes, it's getting better." They want this because they care, and because pain is awkward. The pressure to say this is so great that it's hard to be honest and say "No, actually, it's the same" or "No, actually, it's worse." This makes "How are you?" the most stressful question of my day. I dislike being dishonest and saying "Good" or "Fine" when that isn't the truth, but I don't want to share the fact that I'm actually feeling pretty crappy and am trying desperately just to make it through the day without crying.
3) There's always someone in more pain. My problems aren't that bad, especially compared to people with cancer, or fibromyalgia, or dealing with starvation, or abuse, or losing a limb, or a broken leg, or a million other things. I'm aware of this constantly, and it doesn't help. It doesn't make me feel any better, it just makes me feel like a whiny baby for complaining when so many other people have it way worse. It creates a lot of guilt.
4) I have an abnormal reaction to pain. When I'm in a lot of pain, I actually lose the ability to speak. Most people get louder, I am silent. I literally can not open my mouth and make noise no matter how much I want to. This is inconvenient, to say the least. When I'm in a moderate amount of pain, it doesn't register as pain. If you ask, I will say that my pain is not too bad, I just can't seem to hold my head up or sit in a chair. I have an overwhelming urge to lay down, but it doesn't feel like pain. It's taken a long time to figure this out, and it's basically impossible to explain it to my doctors.
5) The pain scale is idiotic. Doctors typically specify that 10 is the worst pain imaginable. So 10 is equivalent to having your skin cut off and being boiled in oil, or being drawn and quartered, or something like that. So a 9 would be having your leg cut off without anesthesia. That makes childbirth an 8, probably. So I think about this for a minute and then say "4" and they assume I'm not in pain. Because they're used to people who say things like "11" and "15" because they don't understand how ratings work. Here's the deal - if your pain is a 10, you are not going to be capable of saying that your pain is a 10 (or an 11, or 25, or whatever). Doctors know this.
6) Pain makes people mean. I knew this before - I think we all know it. But we don't understand it. Think about the worst day you've had in the past year. If you snap at your husband, slam a few doors, and yell at a customer service employee on that day, you kindof expect them to forgive you when you tell them what a horrible day you're having. Being in a lot of pain is like having that day EVERY day. It's so easy to be mean and expect to be forgiven - because look at what you're dealing with. But you can't. Because if you're mean to the people around you every day that you're in pain, they'll stop being so understanding. You'll damage those relationships. So you have to learn not to be mean, no matter what. Some people are good at this (although it would be unfair to assume that means it's easy for them) but I'm not. When I'm in a lot of pain, I'm mean. I'm working on this.
7) It isn't worth the money. I used to be one of the people who thought it would be worth dealing with chronic pain if I got a fat settlement check. I used to joke about how worth it it would be to get into a car accident just to have the insurance company replace my car. It's not worth it.
8) Not everyone is a saint. There are people who are in extreme pain, yet somehow manage to be a ray of sunshine in the lives of everyone who knows them. I'm not one of those people. I feel like I should be, like dealing with something crappy means you should handle it well and be a better person. But I'm just a regular person dealing with something crappy, and responding to it honestly. Sometimes that's not pleasant. It hasn't made me a better person. At best, it's given me a large amount of empathy for people in similar situations.
9) It hurts when people forget. When I have to peel someone off me at a wedding to keep them from dragging me onto the dance floor, it makes me mad. When my husband playfully hits me in the face with a pillow, I become furious. When the dog bumps me, I snap at him. I know it's not fair, and I feel crappy when I do it, and I realize that it's normal to forget and if you do I totally forgive you, but it sucks when it happens and I have to remind people "hey, bad neck, I can't do the thing, remember?"
10) I can still do fun things. I feel guilty when I call in sick to work but then do something fun a few days later. I'm afraid that people will think I'm faking it. But here's the thing - I have only so much energy to deal with life, and I have to carefully choose how to spend it. Sometimes I choose to sacrifice working, or cleaning the house, or walking the dog, in order to have a little fun. That's what keeps me from being totally depressed all the time. Also, fun things are more distracting, which makes it easier to ignore the pain for a little while. Everyone does this, most people just have more energy to go around.
11) I appreciate it when you care. When you ask me if I'm comfortable sitting in that chair or if I'd like a different one, or notice when I'm in pain, or offer to rub my back, or bring me an ice pack, I appreciate it so much. When you ask how I'm doing and really want to know, I really do appreciate it, but...
12) I'm sick of talking about it. I hate that this is such a big part of my life. It's not interesting, and there isn't a light at the end of the tunnel. Sometimes I have something to share, or I need advice, but sometimes I just don't want to talk about it anymore. Talking about it is depressing, and pointless, and makes me feel whiny and guilty and dull. So if I don't give you a detailed answer, it's not because I don't want to share with you, or I don't want you to know, it's just because I'm tired of it.
There is no perfect way to deal with this. You'll say or do things that irritate me, either because they're unintentionally insensitive or because I'm in a bad mood. I'll respond poorly, either because I'm in pain or because I'm just being a brat. We'll figure it out and forgive each other. I really believe that the more people we know who are going through tough things, and the more we share those tough things, the better equipped we are to be sensitive to others. So don't worry about saying the wrong thing. That's not what this is about. This is just about learning a little more about what other people might be going through, and taking that into account when dealing with them.