To friends and folks:
Hi. As many of you know, I have a chronic illness. It means I live with chronic pain. Sometimes the pain is worse; sometimes, it's better. I've had this stuff since 1997, and there is no cure, there's just stuff I do to manage it. Sometimes, I fly or the weather gets cold and damp, and my pain gets worse.
Some things to keep in mind
1. Constantly "forgetting" that this is true for me and expressing surprise at me being sick again, using a cane, etc, is not helpful.
2. Like all sick and disabled folks, I am not either an uplifting inspirational heroine or someone who is a downer because I have that illness thing. I'm a ordinary, extraordinary crip, dealing with impairment and ableism and stuff. I am a complex human being, not a Hallmark card.
3.My relationship to pain is different than yours. I live a lot of my life basically feeling like I have a cold and/or am at level 5 pain on one of those hospital charts, all the time. That is with nutritional choices, aqua-aerobics, herbs, rest, stretching and acupuncture. Hurting and feeling tired is real normal. It also no longer feels "bad" with a capital B the way pain is for a lot of mostly able bodied folks. It's familliar.
Sometimes, I fly in an airplane or drive many hours or the weather and barometric pressure gets crappy and my pain gets real bad. Bad like I feel like I'm hallucinating. Again there are things I do to take care of this, but there is no magic cure.
Some things to keep in mind when I have a pain flare:
Not great responses:
2. Well, that's a drag!
3. OMG! What happened!
4. Uncomfortable silence
5. Looking totally uncomfortable and freaked out.
1. Sorry to hear that! Is there anything I can do? Do you want me to pick you up some food? Give you a ride somewhere? (Even if this shit happens pretty frequently and I seem to have a handle on it, even if I don't ask, even if I say no, I appreciate this. )
2. Oh man, I'm sorry. How bad is it today? (Normalizing it and just asking is cool. Freaking out about OMG YOU ARE IN PAIN isn't so helpful, but acnowledgment is nice.)
3. Offer to come by and do something low key- like watching videos, read in bed together, eating, is great. Often people want to "cancel til I feel better", and while I appreciate this, I'm gonna feel this way every two months til I'm dead, and if we cancelled everything every time I'm hurty, I'm not gonna see anyone. Sick isn't an all or nothing dichotomy for me, with wellness on the other side- it's a way of life. Sometimes I do indeed need alone time to chill, but sometimes, I like it if you come over.
Many of these things may also be true for other chronically ill/in pain/ disabled friends you have. Or they may not. Asking, hey, how can I be in your life in a good way when you're hurting? and listening to what the person says, is always a good way to show up for sick and disabled folks in your life.
This concludes this public service announcement. ;)
PS: Oh yeah- telling me about a magic cure or telling me I should slow down or if I just did X thing everything would be fine also doesn't work so great.
as of september 2010, I'm committing to post one new piece a week (disability and travel may remix this intention.) all this work is shared under a Creative Commons license- credit if you share, no commercial use allowed.
This work by Leah Lakshmi Piepzna-Samarasinha is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.