Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.
Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.
A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.
Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.
As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.
I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?
When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?
Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.
Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
April 25th, 2010 at 6:31 PM
Wish I had your acting chops, Kairol. Ever considered leading workshops on how to play that patient/mentee role?
My own attempts to get beyond the canned spiels and engage doctors on a deeper level have not been very successful. How do you manage to ask more sophisticated questions and/or report nagging symptoms without coming off as a worry wart or, worse, a detested hypochondriac?
April 26th, 2010 at 10:13 AM
Great question. Here’s a two part answer:
1. I do not feel like a hypochondriac for asking more sophisticated questions - I feel like a really smart woman capable of understanding some of the nuances of medicine. This has become a huge part of my persona. I know I’m a smart woman and any doctor, as they get to know me, will find this out too. I’ve been living with cancer for 10 years and my confidence around this did not happen over night but it is rock solid now!
2. I DO still feel like a hypochondriac when it comes to reporting nagging symptoms. (I know I should not feel this way. It is my doc’s job to help manage my symptoms and side effects.) One thing that helps with both reporting symptoms and asking questions is this:
Before my doc appointment I type out a concise, coherent list of questions I want to ask and a list of symptoms I am experiencing, followed up by a question like - How common are these symptoms and what can be done to manage them? I make two or three copies of this list - one that I hand the doc at the very beginning of the appointment and one for me and the person accompanying me in the appointment. It helps to have it written on the page - then I don’t have to verbalize each symptom, I feel like less of a nag, and it is concrete in writing for my doc to see.
Handing my doc a list at the beginning of an appointment is a really uncommon thing to do -it helps my docs remember me, know me as a serious prepared patient, gives us something to joke or laugh a bit about.
April 26th, 2010 at 12:47 PM
Wow, how perfect is this topic as I’m about to leave in 30min for a “meeting” with my oncologist to help try and improve the communication and be taken seriously, instead of being unfairly deemed a lazy hypochondriac. It’s such a frustrating thing and I’m still trying to find what works. I’m also seeing it depends on the doctor. I have other medical issues and unfortunately see a lot of doctors. Some doctors treat me with respect, answer my questions, talk to me on a higher level. Others, like my oncologist, it seems there’s just no breaking through. Today is my attempt to give it one last try.
I always write down notes for myself, sometimes I give it to the doctor, but sometimes they get distracted with that and don’t listen when I’m talking. Ha, I’ll also try to use bigger vocabulary and speak more eloquently to try and show them they dont have to talk down to me.
It’s funny you mentioned “whoring” yourself. I used to tell my friends, I feel like I need to whore it up a bit, and maybe then these male doctors would respond. A lot of times when I have a choice, I tend to choose more female doctors, but they can be jerks too sometimes. Overall though, I’ve found females tend to take you a little more seriously then males, but of course, it still depends.
I used to try and not cry and look like a “hysterical woman”. But then after getting nowhere, I just let myself break down. Got nowhere with that either. I think today I’m going to really try to not get emotional, just talk slowly/calmly and I like what you said about the direct eye contact. Maybe I just need to stare them down a bit so they see I’m serious and sincere.
Great post Kairol, and I’m curious to see what works/doesnt work for everyone.
April 26th, 2010 at 4:02 PM
You are ABSOLUTELY correct! The whole “whoring oneself out”, not in your imagination. I discovered quickly that if I wore make-up, did some research AND had my list, things moved along better.
With good ol’ Kaiser they have a play book they don’t share and when you deviate outside those lines, they really don’t know what to do. I manipulated one of my husbands doctors into seeing my point of view (easier to do than I thought) to get what he needed and then fired that doctor. Because I now work at Genentech I have access to all sorts of information that just happens to be about drugs for his type of cancer so not only do I know the options, in one instance I handed the doctor the phone number for the research group AND the drug info printouts so he could check my research before he tried telling me there weren’t any other approved drugs out there…
Why they don’t think we can’t figure this stuff out in the internet age is beyond me. Why wearing lipstick and a shorter skirt should work just makes me laugh. I, too, have a degree in theater - design, not acting but those couple acting classes I had to take came in handy.
The assumption that I was “only” the wife and caregiver and therefore to be ignored and that apparently I had no capacity to learn was worse than the “your husband has cancer and a 30% chance he’ll be alive in 5 years” statement.
Now if we could only cure cancer with a good red lipstick and a great short skirt we would rule the world! The college I went to has an unofficial motto : Remember who you are and what you represent. I have decided to represent the women who don’t take the limitations given them in any situation without at least asking a few questions, poking around on the internet and talking to learned friends. If that makes me a bitch, I will wear that proudly. I have to teach my daughter something, it might as well be to take on the world with gusto and intellect and never, ever settle for the first offer.
April 26th, 2010 at 6:33 PM
I think any way you can appeal to your doctors as human makes for a positive interactionand better care. Any way you can get them to care about you (short of something unethical or immoral) is helpful. Drs care more for people they like. human nature, no?
Dressing for an appointment is a sign of respect. If you want to be treated like an adult, dress like one. If someone came into my office looking like a schlump, I might think differently of them than someone who made an attempt to be presentable. Life is one job interview…
I don’t think that wearing a short skirt is a bad thing. Whatever it takes…wit and charm, long legs, a smile. It all gets you somewhere in life. Why would the medical drs office be any different?
April 26th, 2010 at 9:52 PM
Hi folks, Just some quick thoughts, as I’m kinda tired today:
* Doctors are no different than any of the rest of us, except for their diplomas and prescription pads. You’ll find great, good and bad doctors. Some are fine people, others are complete jerks and then, there’s Dr. Inbetween.
* There are a few reasons that, I believe, make it difficult to communicate at times. Most doctors are over-booked, swamped by very sick people and do have some ‘whiners’ in their patient load. Please also remember that in order to do their job, they are taught to be ‘at arms length at all times’ from their patients, so that they do not become overwhelmed with all that they see/have to deal with in a day. BUT, those are not excuses for failing to communicate and deal with a patients legitimate concerns.
*The list of questions/symptoms is a great idea, give a copy to the doc even if he doesn’t seem interested.
* Don’t worry about crying, they see it all the time. Sick people become emotional, so would the doc if he/she felt the way we do. They’ve been trained to overlook your tears/distress so that they can function and move on to others needing them.
*I don’t believe they respond to what you’re wearing/makeup etc, as I have laid on the table looking like a corpse at times and still been attended to in a professional manner. No amount of makeup could have saved me with my lousy ticker. But if it works for you, go for it!
If I may, I’ll tell you of a true story that occurred during one of my hospitalizations. It’s all about a doc who doesn’t listen or a patient who’s not ‘delivering well. My heartbeat had become so erratic that they could not control it and I was dealing with a new to me doctor, lots of experience but new to me. I had been up a mountain when I ‘lost my heartbeat’ and I kept asking, ‘could this have happened because I went up that mountain?
Twice a day, I asked and twice a day, he turned and said to his gathered interns/residents/etc ‘it’s a very small mountain’ and he’d leave. I was beside myself as I felt that the ‘very small mountain’ was a ‘very big problem’!!! Finally, I realized that he was missing my point. So, the next day, I asked ‘could this have happened from a decrease in oxygen’ and he looked a bit surprised and said, ‘it could, when were you short of oxygen?’. My reply?? ‘When I was on top of that very small mountain’.
It’s been sorted out, took two operations but we’re good!
Must admit, my Hubbys’ oncologist can be a pain, I’m working on him…..
April 27th, 2010 at 1:51 PM
Thanks for all of your comments.
LORAN - You sound like my missing wonder twin. I think we would be a stellar team… Your comment raised a really interesting issue that maybe I’ll write more about someday: Is it different having a male vs female caregiver sitting in on an appointment for you?
As I wrote this post, I recognized that I actually have to whore myself a little bit less these days. I think there are a few reasons why. One big one is that I am now married and having my husband along does, with some doctors, make a difference. I think I’m taken more seriously when my man is in the room. So what a juxtaposition it was to read your comment about being treated as “only” the wife and caregiver.
ALK: I gotta disagree with you on this one: “If you want to be treated like an adult, dress like one. If someone came into my office looking like a schlump, I might think differently of them than someone who made an attempt to be presentable.” In other industries I agree. But with cancer care we are often talking about people who are in severe pain and discomfort. There were days when I had a to chose between using the energy to get dressed appropriately or to write a check to pay a bill. Sometimes I was so fatigued that my skin ached and wearing sweats would have decreased my pain, but instead I chose to step it up and be less comfortable because I felt I got better care. Living alone and having to ask everyone for favors, sometimes I didn’t have enough clean clothing to look very nice because my laundry was being done at a friend’s house and I just had to make do. If there is any time or place in life when people should be treated well regardless of their appearance, it should be during cancer care.
LD: Your story is a fantastic example of how communication can be interpreted two different ways, and how to remedy the situation by framing things in doctor-ese.
TARA: Good luck on your doc appointment. I hope you’ll let us know how it went and what worked or didn’t work for you.
Keep your comments coming!
Kairol
April 27th, 2010 at 3:00 PM
Hi again,
I’m sorry to report the dr appointment was pretty awful. I wish I had someone like you or the other posters with me, to see how you guys would’ve handled it. Ha, cause I think he’s one of the toughest to break! I’ve never had this experience anywhere else. And I was so frustrated/defeated, but I realize now I just can’t win this one, but I had to know I tried. Ha, I was wearing a jeans and a tshirt with smiley faced cupcakes on it, so maybe that didnt help, but with him, I honestly think I could show up with the president next to me and I still wouldnt be taken seriously.
I tried to be calm and sooth his ego a bit, to no avail. I tried to maintain sincere eye contact. I had notes written for myself, kinda “talking points”, tried to be clear, ha, used a lot of “I” statements, but NOTHING I said or did mattered. And I really think, in this case, it was just the “audience” I was playing to was just not open to receiving anything. Trying to have a mature conversation implies the other party is able to do so, but when you’re dealing with someone very stubborn and adamant, it’s not really a conversation anymore, I find.
He kept saying things like I’m a good doc, been doing this a long time,and repeatedly said “I know I am right.” I told him I know he’s a “good dr” that I wasnt questioning that, but it didnt help. I realized that with that logic of him always being right, that meant by default, that I had to be wrong. So it didnt matter what I say or what my body feels like, apparently he knows my body and whole self better than me.
It’s frustrating cause I’m sure he painted me as a “whiner”, and someone who doesn’t try, and I’m soooooooo the opposite of that. And that’s why it infuriates me for him to have such a harsh,inaccurate opinion of me based on no facts. He literally thinks I”m lying to him. Ex: He’ll say “you need to exercise.” Because of this, I’ve consistently done so over the past year, eventhough it’s hard for me and I feel sicker from it. When I tell him I have been, he replies to me by drawing a pic on the dry-erase board of a bike, and says I need to get one. If he ever listened to me, he’d know I have one and that’s what I’ve been using to exercise this entire time, in addition to adding a strength training program! Ha, I even have it documented the amount/type of exercise I’ve done this past year, I told him I could show him if necessary, but I can tell he still didnt believe me!
Anyway, sorry got a bit venty there, ha, still upset over how I got nowhere yesterday, despite my best efforts, but I just shared that example, to show what I’m dealing with. I wonder if it’s at all possible to deal with someone so rigid and caught up with being “right”. Going forward, I’m thinking it’s not, and I’m done trying to justify/prove myself, it’s wasted effort. It just sucks cause like someone mentioned above drs will inevitably treat patients they like better than ones they dont. That’s my main concern and unfortunately there’s no other local specialists I can see and I need someone local. So I gotta make it work.
April 27th, 2010 at 7:43 PM
Interesting blog topic, Kairol! I have the unique position of being on both sides of this one - as I am both a doctor and a young adult cancer patient. Even though my docs know that I myself am a physician, I still struggle not to come across seeming like a hypochondriac to my Endocrinologist. I personally don’t think that how patients dress or wear make-up affect their care; it certainly doesn’t for me from a doctor standpoint. I can’t speak for the male doctors, though. ;)
One thing that I would say is a fair general recommendation for most physicians, is that docs don’t like it when patients hand them TOO LONG LISTS of complaints or questions. The key is to go into the office visit (or phone message, etc.) with the top 3-5 complaints or problems, and save other issues or things that seem extraneous to that specific doctor’s visit, for another day or another doc.
Another thing that really helps is giving your doctor a small gift or thank-you note if you genuinely like them or they’ve done extra stuff for you (e.g. filling out disability forms, etc.) — we don’t get many of those nor a lot of appreciation for the 60+ hrs per week that we work! ;) :P
April 28th, 2010 at 1:54 AM
I have often thought I got more respect when I was still able to work & showed up to my appointments in a suit with a briefcase. Now I show up in casual clothing suitable to my life as a disabled person and get less respectful, more dumbed-down treatment, especially by doctors I’ve only recently started seeing. It’s frustrating. I’m still the same person. I know everything I knew then. I just don’t have to dress up in uncomfortable clothes to play a part anymore.
April 28th, 2010 at 3:34 PM
KIM: Fascinating comment about giving docs a gift. I have so much to say about it that I am going to turn it into a future post! Thanks for the fodder.
DIANA LEE: I’m sorry that you are getting such a change in treatment now that you are dressing the life of a disabled person.
For people who think that a doctor would probably never treat a patient differently based on appearance, I say, let’s consider that the doctor is just part of the culture at large. Our culture makes huge stereotyping judgments about people’s intelligence based on their clothing, dental appearance, accents, weight. I would like to say that I’m above this, but I am sure that I make these horribly unfair judgments from time to time too. This is no excuse for me or any doctor to do so. I just don’t doubt that it is happening in the critical context of doctor patient relationships. And yes, I have noticed that with a briefcase and Michelle Obama pearls, I kick ass when dealing with hospital administration! Unfair but true.
TARA: Sorry to hear that your doc seems utterly arrogant and self-centered. Just as people with a diagnosis of narcissistic personality disorder can never be cured, I don’t know if patients can ever break through the ego of a doctor who thinks they are god. Luckily, the majority of docs do not think they are god, but yours certainly sounds like he does.
It sounds like you have tried everything you can and that you have no choice but to see him. The best course of action seems to be to do what I do when interacting with people who are not rational. I have a limited set of expectations; I make clear and realistic goals of what I want and know I can get out of the relationship; and I stop trying to get from then what I know will never materialize.
He may never trust you, listen to you, or treat you with respect. Does he still make prudent, educated judgments about the course of your disease and your care? I’ve had doctors who are asses but I stuck with them because even though they didn’t treat me with respect, they knew their medicine and guided my care well. I hope you can continue to feel proud for having tried. Now go treat yourself to a real cupcake!
April 28th, 2010 at 6:31 PM
Hey Kairol,
Thanks so much for your reply. It made me feel A LOT better and I totally agree with your advice on what to do going forward with people who are not “rational”. Cause I think you’ve hit the nail on the head there and I didnt know how to deal with the irrationality anymore. But youre right, limiting expectations and goals to only what I absolutely need and the key word, CAN actually get. And youre right, stop trying to get what wont happen, otherwise i’m just frustrating myself. I think I now see that, but had to know I tried one last time and gave it all I had before giving in to it. Ha, and fortunately a CRUMBS cupcake store opened in the town next to me, so yeah for that! ;-)
April 28th, 2010 at 9:07 PM
Of course, K, everything you say about your care/dress is true. I am sorry you were so sick at that point in time. I guess what I meant but did not say is that if you show up with a hoddie on your head (and not because you have lost your hair due to chemo, but more as a fashion statement) as many young people do, well a drs appt is not the time to wear the hoodie on the head. Wear a hoodie, if you want, but put the hood down. That type of respect through dress. Appropriate clothing for the environment, when you can, because as you so aptly pointed outsometimes one is so sick that they should be cared for no matter what. (I too have been there)
I was more referring to those in between drs appts -times, which hopefully we all get. And Yes, I know sometimes we don’t, unfortunately.
April 28th, 2010 at 11:40 PM
You’re absolutely right that we’re all guilty of judging a book by its cover. One of many things I’ve learned the hard way through my illnesses.
April 28th, 2010 at 11:48 PM
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April 29th, 2010 at 12:07 AM
Oh Kairol, I could write a book on this topic about my experience with my endo and how my relationship with him took a dramatic 180 from awful to perhaps a little TOO good. What changed is that I was overweight, and then I wasn’t. The “prettier” I became the more engaged he seemed to be with me/my case. I also think that in a more psychological sense, we were pushing each others buttons. There is transference in all relationships, not just those with shrinks! Some little thing reminds us of someone from our past, probably an authority figure, and we react and relate to them as if they are that authority figure. Transference can also cause irrational hatred. This in no way excuses any bad behavior of course, but it is interesting to ponder.
I often dressed for my endo appointments. It made me feel better about going and it was a nice distraction. I could think hard about “What am I going to wear today?” Instead of, “I hope there isn’t a big tumor in my neck!” I also always wanted him to know that I was okay psychologically, and that coming in to see him looking nice signaled that I cared about myself. He once told me that I almost knew as much about thyroid cancer as him and I have to admit after him talking to me like an idiot before, it was nice to hear.
I often also played dumb, knowing the answer to the question in my head but asking him anyway, then adding layers onto his own answer, and ending with a “right?” I think I was walking the line of being the submissive patient and a know it all, throwing in just enough submission that he thought he was still in charge. It wasn’t calculated though. I just went in there basically being myself. No notes, no pages of research. Just a dress, heels, and a smile.
May 16th, 2010 at 6:18 PM
I would love to dress up a little for doctor appointments—it would certainly help me feel more comfortable and like myself—but the nurse usually makes me change into a big flapping hospital gown before I ever see the doctor, so he never sees me dressed in street clothes. On some occasions, I can get away with wearing a loose top and pants that can be unzipped so that he can check my lungs and abdomen, but these are not especially sharp outfits. How do you all manage to avoid the hospital gown routine?
May 16th, 2010 at 6:31 PM
Great question from Anonymous (May 16): How do you all manage to avoid the hospital gown routine?
With thyroid cancer, many of my doc appointments are fully clothed because they just need access to my neck. When I see my GP, he usually sits and chats with me face to face fully clothed, then leaves the room for me to change into a gown. Yes, it takes him time to leave the room for me to change - but maybe he saves time int he long run because we have more productive communication since I’m not fidgety waiting to throw my clothes on.
For more on this very topic - check out these posts and comments:
Standing Up to Your Doctor Naked
https://everythingchangesbook.com/kairol/doctor-patient-communication-power
Fashionable Hospital Gowns
https://everythingchangesbook.com/kairol/hospital-gowns