Dignity matters. A lot. How do you maintain your dignity when you’re a cancer patient (or any kind of patient) and feeling pretty darn vulnerable?
Note: This post is also available as an audio via the Library.
Let’s talk about it.
Ensuring a patient’s dignity should always be a top priority for care providers, maybe even the top priority. So, why does it too often seem it is not?
Maybe dignity isn’t the right word. Perhaps it’s more about respect. Respecting each patient’s totality first and foremost as a person – a living, breathing human being who just happens to also be a patient.
Patients by nature are in a vulnerable state. Being sick or injured makes you vulnerable, to some extent anyway. When you’re not at your best physically, you’re likely not at your best mentally or emotionally either.
And yet, when we’re patients, we’re still sorta expected to be at the top of our game. We’re supposed to arrive at appointments with our lists of intelligent questions in hand. Listen to a lot of medical jargon we may or may not fully understand. Absorb information/directions we don’t want to think about much less absorb. Make decisions, sometimes quickly. Accept being examined, poked, prodded and questioned about whatever ails us and so on.
It’s a lot!
And while we’re undergoing all this scrutiny, we’re often asked to disrobe, sometimes exposing our most private body parts.
Women are subjected to this to an even greater extent than men. Sorry guys, this is just a fact. All you have to do is think pelvic exam and stirrups and I think you’ll get my drift. Well, if you’re a woman you will, for sure.
Throw in a cancer diagnosis. Breast cancer, to be exact. (I’m sure other cancer-type patients and patients in general relate, so be sure to share down in the comments, if that’s you.) All those initial exams and consultations require a lot of disrobing and exposing of one’s breasts. And then, there are the procedures themselves. And then, the follow ups.
It can be embarrassing, even downright humiliating. Oh sure, medical people have seen it all. Many times. But patients haven’t been through it. Sometimes, doctors and other medical professionals forget this. So, I guess this post is a little reminder should any of them be reading this.
One simple illustration of this uncomfortableness that some of you might relate to is “the photo shoot”.
If you’ve had a mastectomy, with or without reconstruction, you’ve probably experienced the photo shoot.
Are you nodding your head about now?
If you’ve had a DIEP flap surgery like me, you’ve likely had a fair number of photo shoots. Ugh!
Can I just say, I HATE them!
Below is an excerpt from my memoir about my first one:
As we wrap up our meeting, the nurse comes back into the room with a camera for God’s sake. She escorts me to another room where I stand topless in front of a blue screen like the kind kids pose in front of for annual school pictures. She gives me directions about how to stand and turn, which I robotically follow. My breasts are photographed, preserved for study and comparison, suddenly specimens requiring digital documentation. They are now originals for which copies must be made. I know it’s silly, but I feel awkward, exposed, embarrassed and even a little cheap.
With my newest medical team, I’ve been pretty vocal about my objection/discomfort to this now semi-routine part of follow-up appointments. We (actually they) attempt to make light of it, but it’s really not amusing at all. Not one bit.
All that disrobing, standing under lights, turning and positioning, along with the clicking sound of a camera is quite unpleasant, to say the least. Knowing your vulnerability is being documented, as well as your breasts, makes you feel, well, even more vulnerable.
Another example happened while I sat in a waiting area wearing a gown while waiting for my breast MRI. Just feet away were workers (yes, male workers) busily working on the facility’s renovation project. That close proximity thing should not have happened during patient hours. It’s not like I was that exposed. But it felt awkward nonetheless and yes, inappropriate. At the very least, a plastic barrier sheet of some sort should’ve been in place.
Why was I subjected to that intrusion, that invasion of privacy?
In her post, Abigail writes this:
In order to get me into the right position (for radiation) and secure me to the table in order to ensure that I didn’t move at all, I had to take all of my clothes off. Once I laid down on the table, some sheets were placed strategically to cover my breasts and my pelvis, but the process of going from wearing a gown standing up, to laying naked on the table required exposing myself in the transition. During the planning sessions, I had a few female therapists who helped shield me, but when I walked into the actual treatment the first day, there were three (3) grown men looking at me.
Yeah, talk about vulnerability, right?
She goes on to say, she did it. She had to in order to get the radiation targeted as perfectly as possible. But still…
Many of us relate. Perhaps you do. After all, we do what we must, especially when talking about cancer treatment and in Abigail’s case, stage 4 cancer treatment.
But while we’re attempting to do everything required of us, medical professionals need to do all that is required of them as well. And sometimes, that doesn’t happen.
In another equally wonderful blog post, the late Michele Wheeler wrote about an experience she had. (I can’t share the link as it appears her blog has been deactivated, which saddens and disappoints me.)
Michele was undergoing a scan of some sort and while the techs were busily doing their thing, they were also discussing a birthday party one of their kids was having, the whole time ignoring the intense fear and anxiety Michele was feeling. She wrote that she was ready to lose it. I mean, really lose it. And yet, they were oblivious to her in those moments.
Thankfully, another technician came through for Michele by offering her a warm blanket and some kind, understanding words. Such simple things that mattered so much.
A direct quote from that post that I saved because I loved it so much is this:
Wrapped in blankets and trapped in illness, I felt seen.
That third technician’s kindness soothed Michele’s anxiety and calmed her down. He cared about her dignity just as much as getting the scan done. Yes, he was just doing his job. The others, not so much. Again, she felt seen.
When you feel seen, you feel cared for. You feel like you matter. You feel less vulnerable. You feel safe. You feel respected. Perhaps most importantly, you feel better equipped to handle whatever unpleasant procedure you are facing.
That’s a pretty big deal!
When my elderly parents were ill and ultimately landed in hospice care (not at the same time), both times, I observed medical staff astutely, assigning myself the role of watchdog. There’s even a chapter in my memoir with that title.
It was quickly apparent which staff members were skilled at providing care while also being mindful of how important it was to recognize my parents’ vulnerability. Some obviously understood about honoring their dignity. Others not so much.
There are countless examples/situations in which patients feel vulnerable and worse, feel that their dignity is not considered. If you’ve experienced such a thing, share about it in the comments if you’re comfortable doing so.
So, how do you maintain your dignity when you’re a cancer patient and feeling extra vulnerable?
Here are six things to consider doing that might help:
1. When meeting a new doctor of any sort, request that you meet for that initial conversation while you are still fully clothed.
This is such a simple request to honor. This might mean your appointment takes a few extra minutes. So what?
2. If you are feeling uncomfortable about an exam or procedure, or if something is going on that bothers you (as in Michele’s experience), say so. (Yes, I know it can be hard.)
Sure, you probably will still have to put up with that embarrassing or difficult procedure, but stating your uncomfortableness out loud, hopefully, makes your team more aware and therefore, more understanding.
And yes, sometimes they might need a reminder to not talk about their kid’s birthday party, or whatever, during your procedure. Unless, of course, doing so helps distract you.
Remember, your care providers aren’t mind readers. Sometimes, like all of us, they need reminders.
3. Bring someone you trust with you IF there is someone to fill this role and IF this would be helpful/acceptable to you.
Having a person you trust in that watchdog role can make a big difference for some.
4. Expect, and ask, to be treated as a whole person.
You deserve nothing less. You have every right to expect to be treated as a whole person. After all, you are not your breasts or whatever body part is being scrutinized. You are not your medical ID# or Medicare# either. And your experience as a patient starts at the check-in counter. Don’t accept lack of professionalism there either.
5. Before and during a procedure, have things explained to you before they happen.
Sometimes, just knowing what to expect can be so helpful. If you’re not told what to expect and want to know, ask.
6. Report things that you feel need reporting. Accountability matters.
Speak up. Perhaps doing so will bring change, improvements, increased sensitivity or at least awareness. Your speaking up might help countless other patients down the road. One easy way to do this is to fill out those surveys many of us receive post appointments.
Speak up about exceptional care you’ve received too. (Michele did that in her blog post.) When someone really steps up, they deserve acknowledgement. Report that when you feel moved to do so as well.
Finally, as I’ve said many times, never suffer in silence. Just do not. And sometimes, suffering isn’t of the physical sort.
Your dignity matters.
You deserve to be treated with respect. Always, but especially when you’re the patient.
Don’t be afraid to ask for what you deserve.
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As a patient (for any reason) have you ever felt like your dignity was not respected?
Have you had a photo shoot (of the medical variety) or a procedure that made you uncomfortable?
What tip(s) do you have for handling uncomfortable and/or embarrassing appointments or procedures?
Do you have an experience to share in which a medical person really came through for you regarding respecting your dignity?