Something I wrote one year ago:
My hand gets all messed up. (Long story involving a cute guy who is way too into his politics. Don’t ask.) I do battle in insurance hell — upshot being that I’m assigned a physical therapist. Oh yeah, three weeks after I’ve requested it, but that’s another vent for another time.
Anyhoo, so I’m whistling with excitement that — yay! — I’ve cut the head off the faceless monster, and my hand is now on the fast track to healing.
That’s when the physical therapist tells me to put my hand on the table in front of me. There’s an ultrasound machine all hooked up, and she’s got that ultraslimy ultrasound cream out next to her.
No brainer: I’m getting an ultrasound massage, which is why she wants my hand on the table. Right? Wrong. The physical therapist firmly grasps my hand and twerks it, saying, “You never want to put your hand in this position.”
Now we all know that resistance is going to cause worse potential damage than just relaxing into the grip, so there I am making all Zen-like, thinking that any second now, it’s massage time.
But lickety split, she’s moving my hand from Bad Position #1 to No No Position #2. “And you never want to do this either.”
Um, where do they train these people?
Flashback to 2003, when another physical therapist did the same thing with my then-injured knee, three weeks into therapy. I’d been the model patient — doing all my exercises just as instructed, as often as told — and finally, thankfully, I had no knee pain.
That is, until the physical therapist gripped my knee, twerked my thigh in one direction and calf in another, then pronounced, “You never want to put your knee in this position.”
Back then, as now, I ended up in terrible pain — worse than when I’d walked in for “treatment.”
Take-Away Lessons for Health Care Professionals:
As a chronic pain patient, I’m coming to you for a reason: I’m. In. Pain. So please, please do not touch me, unless and until you take these ten basic steps:
1. At the start of a session, invite me to speak up at any time, if the way you’re proposing to touch me, or the way you’re already touching me, does not feel OK for any reason.
2. Remind me to speak up before my body hits a serious pain zone. Celebrate my body’s wisdom by telling me to let you know when my body even signals an “advanced warning” not to move or be touched a certain way.
3. In case I don’t have awareness of what that signal might look like, explain it to me. In case you don’t have awareness of what that signal might look like, say something to this effect: “You might feel a part of your body tightening and tensing up, or you might feel sudden fear and anxiety.”
4. Describe how you propose to touch me, and explain why you need to touch that body part in that way.
5. Pause and make eye contact — leaving room for me to object. Accept my objection as valid, even if it’s a vague, “I’m not comfortable with that.”
6. Recognize that you have no idea of my personal history — including and beyond the physical pain you’re attempting to treat. Be aware that among other unknown variables, I may have been physically and emotionally traumatized by my previous health care practitioners, which may make it hard for me to trust you at first.
7. Remind yourself that retriggering some past wound, whether emotional, psychological, or physical, will not help me heal, and may in fact hinder my recovery process. Keep in mind that my body can only heal when I feel safe and comfortable, and that as my practitioner, it is your job to ensure I feel just that.
8. If I do object, be caring, respectful, and creative enough to come up with an alternative way of achieving the same goal, or at least one close to it. If you do not know an alternative, be honest with yourself and with me — in a matter of fact way, not a blaming-me kind of way.
Later that day or week, be humble enough to investigate alternatives to incorporate into my next session. And keep in mind that as my body grows to feel safe and comfortable in your hands (which will be encouraged by your listening and responding to me), I may be more responsive to your touch in my next session. Or the one after that. And if I’m not, well, good for me (and you) for listening to my body.
9. As you’re touching me, periodically check in and ask if I’m doing OK. I may have a hard time speaking up, and your reminder will help me feel comfortable to voice what’s really going on for me.
10. Keep in mind that you are here to serve me — that, as Lorenzo Puertas (director of the East Bay Pain Care Center in Oakland, Calif.) says, all of your med school loans, late-night studying sessions, and pre-finals jugs of coffee were for this very moment. And as Anasuya Batliner (certified cranio-sacral therapist and nutrition counselor in Berkeley, Calif) says, as the patient I am your supreme teacher.
Take-Away Lessons for Chronic Pain Patients:
1. Just because someone is in a position of medical authority does not mean s/he is trustworthy. Not even if that person is nice. Or has excellent hair. Or has come with the highest of referrals from the most fabulous people who also have excellent hair.
2. While it’s impossible to think up every potentially harmful action a health care practitioner might take, I can take steps to preempt damage. I can make sure the pracitioner knows to be super careful and sensitive with me, and I can remind her/him at the start of every session.
For example, I can say, “Before you touch me, I need you to tell me what you want to do, then wait for me to agree.” Of course, doing so opens the whole issue of pracitioner attitudes and the doctor/patient power imbalance. Which leads to #3:
3. If I do not feel comfortable in some way, and if this discomfort either leaves me silent around stating my needs or questioning if the health care practitioner will honor them, I need to leave. Promptly. In the middle of a sentence. Up & out. This lesson has been the most difficult of all, becasue when…
a) I have no money (in the past decade, six digits worth of green have gone to body work, thanks to our profit-driven health insurance that doesn’t cover much of what I need);
c) as a result of a and b, I’m terrified of ending up homeless and dying in some pit, so I rilly, rilly need to get this medication/diagnostic test/physical therapy…;
d) I’ll have to wait days, weeks, or months for a new appointment with a new person;
e) my options of health care practitioners are limited;
g) the insurance case manager already has flagged me as a pain-in-the-ass patient;
h) I have been completely traumatized by the medical system and am left feeling shell-shocked and exhausted;
i) dealing with all this crap is the bane of my existence, and I’d much rather be moving ahead with my life;
j) I’m in the vulnerable position of being a patient in an office, knowing everyone will give me freaky energy if I just up & out;
k) the practitioner is in the position of power to tag me yet again as a “problem patient”;
i) the consequence may be even less access to medical care…
it seems better to stomach a little discomfort and just get on with it already. While sticking with something has at times left me more informed about how to heal than when I walked in the door, however, it has also left me down for the count on a couch, barely able to move for months.
Conclusion: The risk just ain’t worth it. I need to find ways to be self-reliant, even when I can barely turn a door knob. It’s a bitch. It stinks. It’s also just the way things are.