The Last Thing I Have to Say about the Ultrasound Experience. For Now.

By: Loolwa Khazzoom, Founder, Dancing with Pain

June 19th, 2011 • Patient AdvocacyPrint Print

(Still Friday 6/17). Here’s the other thing about the experience with the ultrasound tech: When I said to her that I needed help moving, namely, I needed  her to move the wedge under my knees (which I had requested, to avoid back pain), she didn’t understand. She repeated her instructions to just “scootch over.” So I reminded her that I am very sensitive and that I need help to avoid pain.

Then she started asking me about the cause of pain. I said as congenially as possible that I didn’t want to get into it – “long story,” I said. She made some banter about it being a long story, then asked if I had lupus. “Invasive question,” I thought. “No,” I answered.

Here’s the thing: If at any point in our conversation, she had stopped initiating the back and forth, she would have noticed that I was not initiating conversation, other than along these scintillating lines: “My arm is hanging off the side of the bed;” “the towel is rolled up too thick. I need to stop to unravel it a little;” and “my neck is hurting. Can we take a break?”

But she kept initiating conversation, because – as she readily admitted herself – she wanted her work to be fun. So I was, against my will, turned from patient to companion. And she went on with the invasive questions: “Have you gotten a biopsy?” “No,” I replied. “Are you going to get one?” she pressed. “It depends on the results of this test,” I answered. “Oh, I get it,” she said, “if it remains the same, you’re not going to do it, right?” “Yes,” I answered. “I’m holistically oriented,” I added, partly feeling naturally drawn into the conversation and partly feeling pressure to be conversant.

“Oh, that’s OK,” she replied. “Um, gee, thanks for the approval,” I thought. She started telling me about her sister (or was it her cousin?) who went to a homeopath and loved it and swears by the homeopath, which is fine, and they have some interesting conversations about it, and it’s cool, because her sister (or cousin) is into both conventional and complementary medicine, and it’s good to have a balance, but sometimes they do not see eye to eye…

“Did you get a blood test for your thyroid?” she then asked. “Yes,” I answered. “Was it normal?” she asked. “Please stop asking me questions,” I thought. “I really need to stay still for this left nodule. I do not want to answer her question.” But I felt pressured. “Yes,” I answered.

So there I was the whole session, lying there, with a few different energies pulling at me. The first and predominant was, I really wanted to be quiet and still, so that the ultrasound would get accurate images. And I was trying not to be in pain, despite the fact that my head was uncomfortably far back so that my neck would protrude, and my arm was hanging over the side, thumb under my ass, as instructed, to keep the arm from splaying over.

At the same time I was on some level relating to this energy of this very friendly, upbeat person who was engaging me in conversation. I felt like I wanted to respond to the questions and comments before me, simply because they were before me. I also was feeling very annoyed that she kept talking to me, because I was there for the damn ultrasound and needed accurate images to help me figure out if I have cancer, thank you very much. And I was feeling pressure not to be “rude,” but to answer her banter. And I was feeling irritated by the invasive nature of her questions.

All at once.

I am realizing right now, and it’s making my whole body finally relax, 11 hours after the fact: This situation was very confusing. I felt confused. There were a whole lot of stimuli going on at the same time. And you know what? I did a damn good job of advocating for myself. Maybe not a perfect job, but a damn good one.

I let her know I was hypersensitive at the beginning. When we came in, she was talking kind of loud, so I told her that I had sensitive hearing. I specifically mentioned banging things and such, and she closed the door and said that would keep the noise out. But I figured that having laid the groundwork for a conversation about loud noises, I could tell her if her voice was too loud, without her taking it personally.

I asked for the triangular pillow (wedge, I think it’s called) to be put under my knees. I kept moving it around because I did not feel comfortable. I asked for her help. When she asked me to move to the side, I did not just move; I asked for her help, because I knew that with the wedge there, I would end up hurting myself and being in pain. She moved the wedge. I kept moving until I was sure I was situated in a way that I would not have pain. Or at least as little as possible.

Her touch was very gentle. I praised her on how she was doing with that and on letting me know about stuff ahead of time. Positive reinforcement is important to me emotionally/spiritually, as well as pragmatically. On the latter tip, when you let people know they are doing great, especially when you are high maintenance like a pain patient, it encourages them to continue being careful like that.

When the towel was causing problems – I kept moving my head because it was not comfortable, and I could never move it as far back as she wanted for my neck to protrude – I asked her to stop so that I could rearrange the towel. And when my neck started hurting beyond the point of discomfort, I asked for a break. She asked if I could wait a minute. I said yes. I knew I’d already crossed my threshold, but there was another factor to consider – wanting the test to come through accurately. So I waited a minute.

Then I sat up. I told her I needed a break. And I took it. Despite feeling a bit uncomfortable about taking as much time as I was taking. I took the break until I no longer needed to be taking a break.

So I really did advocate for myself. It’s just that there was so much stuff going on, both above and below the surface.

And then when she started spraying that bottle of liquid, and I didn’t know what it was, I wanted to yell no, to bolt, to ask what it was. While I didn’t do those things, I did take the immediate action of closing my eyes. Despite feeling uncomfortable about doing it because it would seem weird, over-reactive, etc. And she did say something about it. I don’t remember what she said, but I answered, “My eyes are very sensitive.” To which she replied, “Oh.”

And then I did ask her what it was, and that’s when I found out it was alcohol. Which truly shocked me. I thought it was water or some, I don’t know, conventional spray of some sort but not alcohol.

Well after something like this, when I was totally over-stimulated and confused, and ended up in pain all day (from my shoulder to my head, through my neck, ear, and eye, I was in bad pain the rest of the day, leading me to bed after the appointment), I can end up kicking myself. Because I want a retake. Because I notice where I could have better advocated for myself. Because I want that person to undo what she did, to behave better, act differently. I want a rewrite.

Of course, I can’t go back.

But I have been writing about it – this is my third blog post about it – not only to get the angries out, but to process it and share with the world the lessons from it. because every single interaction that I experience in the medical world is a microcosm of the dynamics in medicine today. I can honestly write pages about every wanky experience I have had in my, shall we say, career as a patient. Because in each dynamic are all kinds of social norms and expectations and power differences and so on.

Maybe, just maybe, this experience is opening the gateways for my writing about my journey through chronic pain hell and the medical establishment that was behind most of that hell.

But the bottom line of what I want to share in this post are these two things:

  1. The onus must be on the doctors/bodyworkers.
    When a patient or client comes in for healthcare, she is in the vulnerable position, the child-like position. The practitioner is the one who is responsible for creating a safe and inviting space. Doing that requires a lot of consciousness and care and attention to details. It is a job. It does require effort. And everyone, from doctors to office managers to techs, need to be trained with this level of sensitivity. It is sacred service, with the patient at the center, and must be treated as such. The patient must not be the one who has to set the boundaries and be in the awkward position of saying, “you’re asking invasive questions” or “I can’t talk when you’re doing this test, because it might compromise the quality of the test.” Practitioners are there to do a job and must perform it excellently. We need to set the bar much, much higher.
  2. The only time a practitioner should ask for personal information is when it is directly relevant to effective clinical treatment of the patient.
    The technician had no need to know about what activated the pain and sensitivity or what my choice was for how to deal with the nodules or what the results of my blood test were.
  3. Dual realities are real.
    Just as gender dynamics can make for totally confusing and fucked up human interactions, so can the provider-practitioner relationship and medical context make for all kinds of wanky and conflicting dynamics. Just because I was going along with the banter and just because I was enjoying some aspects of this practitioner’s energy does not mean I would have chosen that kind of interaction or that it was appropriate. And the fact that I participated in it goes back to #1: The practitioners need to make a safe space where patients do not feel compelled, however blatantly or subtly, to participate in dynamics that do not feel comfortable for them. Just like teachers need to create a safe space for students and not misuse their power or access to information.

 Oh one final thing: My mom, Gd bless her, who is always there for me and steps to the plate, came with me to the appointment. Despite having a hard time walking. And after the appointment, when I left, the technician ended up coming down the hall and finding me. (I waited for her, but she didn’t show for nearly 10 minutes, so I left.) And when she saw me and my mom, with my mom in her walker, the technician said, “Who is taking care of whom here?”

It felt like an intrusive question. It also felt at the heart of the “but you don’t look sick” phenomenon. Sometimes those of us who look really strong on the outside have a lot going on inside and need help.

“It’s mutual,” I answered her, without skipping a beat.



Comments

Radiation safety expert June 20th, 2011

Thank you so much  for sharing your experience.
The tecnnician can only explain the process to the patoent  such as “I finished the right side; let me move to the left side” but only the doctor can discuss the findings with the patient and  what to do next. The readers of your wonderful blogs can offer suggestions and explanations to educate you and to ease your pain, but such suggestions should not replace medical advice.
My best wishes to you:)

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