Hey Chronic Painsies! You Gotta Be “On” 100% 24/7 Or ELSE!

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 13th, 2011 • Patient AdvocacyPrint Print

I promised myself I’m going to blog every day. So here’s me blogging through a pain setback. Long and short of it is that I had a bodywork appointment and for whatever reason, I didn’t feel I could advocate for myself when I knew – I knew! – that what she wanted to do would be too much for me. I advocated most of the time during the session (which was a lot – I kept having to speak up), but these one or two times, I didn’t.

I’m realizing as I write this that she wasn’t asking me, I don’t think even once, how the energy or pressure was. Huh. See I was sitting here wondering why do I feel safe with some bodyworkers and not with others.

And I want to write a whole big fat chapter on how bodyworkers need to accept responsibility for creating a safe and inviting space for healing. They have to acknowledge the power they have when they are standing and we are lying down, when they are well and we are sick or hurt. They have to do what they can to create an atmosphere that is welcoming of our feedback.

And this shit is so subtle! It’s like, it can look as if they are doing it, and they can feel as if they are doing it, but still, there can be some very subtle judgments going on, or some kind of energetic vibe where we just don’t feel we can speak up. Plus we’re starting from a place of fucking exhaustion, and – fuck! – there’s only so much we can do.

Fuck fuck fuck! I have had two instances in three days where I mostly – almost 100%, like 90% of the time – advocated for myself, but then there was that 10% that I didn’t, and it cost me! But fucking fuck! Do we seriously have to be ON IT 100 fucking percent of the time?!

I am angry! And I am feeling deliciously happy – that I am feeling angry, that I am writing stream of consciousness, that I’m not giving a fuckety fuck what anyone reading this blog thinks or says, that I am flipping the INTERNAL bird at all the bullshit that goes on in the New Age touchy feely world, and I’m not caring if my grammar is correct or if my sentences are run on or what. And I’m saying fuck! FUCK FUCK FUCK! I love this word. This word is my best friend in the whole fucking English language.

Off the hook. Welcome back. Welcome home.


Patty Rowe January 14th, 2011

I totally get what your saying… FUCK! :)

AMM January 14th, 2011

I know of what you speak. No matter how good I think I have become at advocating for myself or how many times I have done it in the past couple days, I inevitably encounter a situation where I am not an advocate 100 percent of the time and I pay for it.
It does seem that those with chronic pain need to be “on” all the time. It can seem so exhausting, but it is worth it. “OK, I will be the full time warrior and defender of my well being that I must be however much I would like others to take up the slack.” No one else can speak up for us the way we can.
Good luck on the never ending journey of advocating for yourself.

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