Wednesday, December 9, 2009

Things I wish I could tell people, i.e. The Reading Guide I sometimes wish I came with

Sorry, this is kind of long but I've been getting frustrated with friends and acquaintances saying and doing hurtful things. Also, I haven't really edited this, so this might be different when I'm less frustrated

Don’t look at me with terror in your eyes. I am not a monster or a tragedy.

Don’t say “I know how you feel” unless you actually do. If you suffer from chronic pain, you might. If you use a simile or metaphor, you might. (After all, everyone experiences life differently.) But your small headache is not the same as the migraine that narcotics barely touch.

Similarly, don’t treat me like a child, even when I am in a lot of pain. I may not be able to use all my words or cognitive skills when my health is bad, but I am still an adult.

Don't assume I will be "cured." Migraines have no cure, although they can sometimes be treated.

I may be in constant pain for the rest of my life. This does not make my life worthless or a tragedy. Don't think that I am being dramatic if I tell you this -- it is the truth.

Do tell me about your life. I want to hear about what’s going on, what’s good, what’s bad. Even if I’m in pain.

Think before you make a joke. And remember, many of the things you say “as a joke” are things that people have actually said to me. If I think you are making fun of me or if there is ableism in what you say or in your thoughts, it’s not funny, not at all.

Don’t run away from me because of my health. And if you are doing so, examine your ableism or [insert reason(s) here].

Remember that you have no right to my health information, so if you're asking questions, make them optional questions instead of demands for information. Modifiers are often a good idea, eg: "Would you mind if I asked....?" Just because my body doesn’t work the way societal norms expect it to, doesn’t mean you have a right to know what pain level I am in or other personal info.

Don’t expect that if I have told you one or two things about my health, I want to tell you everything.

At the same time, don't make an effort to pretend my health is fine. It's not and it takes up a lot of time, energy, etc.

Don’t touch me without asking. Even if I truly like you and usually enjoy your hugs, on a bad pain day, there are only a couple of people that I can stand being touched by.

Don’t assume you know what is best for my body. I know it better than you do.

Do try to still include me. If I can’t leave my room, ask if I want company. I love when people try to find ways to include me.

Don’t police my identity.

Don’t suggest I haven't gotten better because I’m not trying hard enough or because I don’t know what is best for me. Another one I would assume is obvious, but does not appear to be.

If you are not sure if I will be able to make it, ask! I will feel better knowing you wanted me there, even if I can't make it.

Don’t ask me to do something that I have told you repeatedly that I am never able to do (i.e., even on my best days). For example, if I have told you I will not be able to ride a bike until I have finished PT, don’t ask me every two days if I want to go for a bike ride.

Don’t take things I use for my health without asking. In particular, don’t take my ice packs or heating pad. I am very dependent on them some days and I feel out of control knowing they may not be there when I need them.

Don’t make fun of me for how many pills I take. Society already does that enough.

Don’t give me your super special advice about what I should do to get better, although suggestions are accepted, even appreciated, on occasion. If you are using words like “all you need to” or “just” or “you should” -- back off. If you start with, "I don’t know if you want to hear this, but I thought of you and maybe you would be interested in this…" then maybe you're ok. It’s hard to explain when it is appreciated, but it’s been done well twice in the past 8 months, and badly many, many more times. Keep in mind I only have a certain amount of energy, money, and time. Plus, if you’ve heard of it, I probably have too. Also, I’m the expert on my body.

Don't try to decide what I can and cannot do. You shouldn't have that power and it's insulting, frustrating and limiting when you trying to take that power anyway.

1 comment:

  1. Wow, you have voiced everything I feel as well. It is so powerfully written!