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Thursday, April 17, 2008

How Intimidated are You by Doctors?

I consider myself a reasonably articulate person. I know I am pretty good at research. I am well-educated. And yet, I find it almost impossible to confront a doctor about anything having to do with my health.

I don't mean the kind of confrontation that involves yelling, accusations, or hypochondriacal assertions that of course I have Cushings Disease (or fill in whatever inane self-diagnosis derived from cursory reading of the internet). What I mean is that I become completely tongue-tied, unable to stand my ground (or even indicate that I have any ground on which to stand firm) when I'm sitting there. It's like a disease unto itself. Or at least a syndrome that deserves a name. I don't know why this happens, but it's awful. Here are some examples of what I mean:

Obviously the Doctor Knows Better than I Do Syndrome. I had shards of glass embedded in my finger due to an unfortunate incident involving clumsy washing of some hand-blown wine goblets from Mexico. A year or two later, the glass was slowly being encased in a bigger and bigger lump of scar tissue in my finger, making it hard to bend the finger or use it properly. Mexican glass, being leaded, showed up nicely on x-rays. When the hand surgeon put up the x-ray and showed me the piece he was going to remove, I could very clearly see a second piece of glass lodged a bit higher up. "BUT," I thought, "he's a prestigious hand surgeon. Surely he has seen that speck and concluded that it wasn't glass. Obviously he knows what he is doing." So I said nothing. Eighteen months later, I had to have a second surgery to remove the other piece of glass.

Anything that Will Make the Pain Go Away is Good -- So How Could I Be Bold Enough to Suggest an Alternative? Syndrome. I was suffering from a terrible yeast infection in my nursing breasts, subsequent to Daughter's bout of thrush. I itched deep in the tissue, I had searing pains so bad after nursing that sometimes they made me cry. I did lots of research online, thinking that midwives and other lactation experts might have answers for me. I found lots of useful items. I also went to my OB's office. She couldn't see me that day, so I saw one of her partners. I explained the symptoms to him, and I told him that I was pretty sure I had a ductal yeast infection. He said, "yeast infections don't really go down into your milk ducts; they are topical things." I didn't fight him on it, even though I'd spent hours reading about this, most notably on the website of an eminent Canadian doctor who specializes in the treatment of nursing women. And as someone who had spent several years with shards of glass in her finger, I can say with authority that a ductal yeast infection feels like you have long shards of glass in your breasts -- and it's never certain exactly what will set off the slicing searing pain, but it will happen many times a day. But because I didn't say anything, this doctor gave me a prescription for an ointment, and one for a low dose of an oral medication, and sent me on my way. I had to call back a week later to talk to a nurse because things were worse not better. Finally I was brave enough to quote some of what I'd read, so they tripled the dose of oral medication, and lo! the terrible thing finally started getting under control.

If You Don't Have Something Nice to Say, Don't Say Anything At All Syndrome. I have an allergist whom I like very much as a doctor. But, I've never waited less than 45 minutes after my scheduled appointment time to see him. And the last time I was in his office, I waited an hour and a half after my appointment time to see him. I was the second appointment of the day. There was no one in anaphylactic shock anywhere in the office. And yet, I only complained to the receptionist after my appointment. She said, "Did you mention anything to him?" Of course, I had not. He must have been doing something Important, right?

I have lots of other examples, but I think the point is clear. For reasons I cannot fully explain, I am completely intimidated by the authority of a doctor. I know that it must be incredibly annoying to doctors to have people come in and try to self-diagnose courtesy of the internet, and so I try hard not to be that annoying person. But here's the thing: it's MY body. I know how it feels. I also know how to do responsible research. And I'm not a hypochondriac. So why do I find it so difficult to speak up? Why can I not say, "Every time I come to this office, I wait nearly an hour to see you, even when my appointment is first thing in the morning. What's going on?" Why can I not say, "But while you think this infection can't be where I say it is, lots of literature would indicate otherwise -- and so would my incredible pain."

Do you have this problem? If not, where does your gumption come from? And how do I get over my absurd tight-lipped, self-destructive behavior?

By the way, I WILL jump up and down if necessary on behalf of my children. It's only about myself that I get all weird and shy. And I'm NOT like this in other situations. So. Very odd. Any thoughts? How do you challenge your doctor's authority in situations where it would be not only reasonable, but prudent and useful, to do so?

10 comments:

Mr Lady said...

I used to be very good at standing up for myself at the doctors, but not so much anymore. I couldn't tell you what happened. Part of it is that I don't have my old doctors from home, who knew me and knew I was smart enough to know what I was talking about. Part of it is a new health care system that I am trying to navigate through. Part of it is that I argue with people all day long, and the doc's office is a guaranteed NO FLY ZONE. Part of it is I am a giant wuss.

LceeL said...

I have been very lucky in that my Doctors, in recent years, have seemed more than willing to listen to me - and thus encouraged, I am more than willing to talk about whatever it is that's going on with me and my body. However, my current physician had a habit of making me wait. Until one day I made it clear to her that my time was just as valuable to me as hers is to her. And I didn't appreciate sitting in the treatment room for an HOUR waiting for her. That just doesn't happen anymore. She DOES understand and when I have an appointment, she makes sure that her staff are aware that I shouldn't be made to wait. Too bad she doesn't do that for ALL of her patients, but I'll take what I can get.

Fawn said...

I think I'm somewhere in the middle. Given a bit of time to think, I'll realize what I need to ask for, but sometimes when I'm in the office, I'm tongue-tied. But now that I've had a couple of experiences where I had to go back for a second appointment to get what I wanted ("No, I don't want to wait. Please book me for that ultrasound NOW!) I think I might be better in future. I hope. I think the trick is to have an idea in advance of what I want to get out of the appointment.

Another thing that might contribute is that my doctors have always been so much older; it can be hard to be firm to an elder. Now that I've reached an age where there are doctors MY AGE (if I had such a one), I might feel more like we were equals...

MamaGeek said...

Oh I so know what you mean! My sister is a physician and I'm even scared to ask HER things from time to time. I don't know WHY.

foolery said...

I'm untested, but I'm pretty sure, knowing my cowed deference to authority, that I'd give a doctor all the power. But two very empowering (YECCCHH!! hate that word) sentences were given to me that I will always remember, and having them is like having an arsenal at the ready:

1. "What is the MEDICAL reason for doing what you suggest?" I used a hyponotherapist for pain control with both of my deliveries, and this question was her gift to us to take into the delivery room in case of complications. If medical personnel can't tell you the MEDICAL reason, they may be just covering their hineys or cost-cutting or lazy.

2. My nurse-midwife told the delivery nurses to "listen to ANYTHING Laurie says about her body, because she knows her body." Wow. I can't tell you how much control that gave me.

Long-winded way to say arm yourself with probing questions and a healthy skepticism, and trust yourself.

Great topic, as always, MT!

MIQuilter said...

I used to have this problem all of the time and then end up resenting my drs later but still doing nothing about it when I got less than the care I felt I should get. However, all that changed when I began working at a hospital (no, not as a caregiver, as a computer person). I've been working in that environment for 7 years now and have had interactions other than the traditional "caregiver-patient" relationship with these people. It has caused me to realize a couple of big things that changed my attitude:

1) though (some) may think they are gods, they are only human. thus they are subject to bad days, cranky moods and whatever other distractions that all of us have to deal with at work. There's just one main difference. When I am cranky, uncommunicative and less than "on top of my game"... nobody gets hurt. But when your dr is, it is YOUR HEALTH (and not his or hers) that suffers.

2) many decisions they make are based on "normal and usual" courses of treatment, response, etc. Thus, if 80% of the population has XYZ course of treatment, you will probably get that too - and often they either a) forget or b) don't care to listen to what you have to say that make you in the minority instead of the majority. I will never forget one experience I had. I have endometriosis and was scheduled to go thru 6 months of hormone therapy to repress my period in order to cure it. It is true that many people have found permanent relief with this type of treatment. What happens is that you get one shot that is supposed to last 3 months and then at the 3 month mark get a second shot. For the duration of the 6 months you are NOT SUPPOSED TO HAVE A SINGLE PERIOD. I got my first shot. At month 2 1/2 (a full 2 weeks before my next scheduled shot) I started a period. I called and they bumped up the next shot to the following week. Uh, already I'm thinking, "if the point is to stop my cycle for 6 months, you've already not done that" but I don't question. I just show up. Then the nurse comes in to give me my second shot. As she's about to start injecting me she says "you may have a few days of hot flashes", to which I responded, "Why yes. Actually this is my second shot. For the first 1 1/2 months of my first shot I was averaging 50 hot flashes A DAY. Then for the following month it went down to around 5-15 A DAY". (how fun does THAT sound, any of you ladies who may know what I’m taking about?!?!) "Oh, and also for the first month or more would have spontaneous episodes of blacking out for sometimes hours at a time." The nurses response? "Oh that's really not normal.". And you know what she was doing EVEN AS SHE STATED THIS?? You're right - she was INJECTING ME WITH THE SAME HORMONES THAT DID THAT DO ME THE FIRST TIME AND WERE SOOOOOOO "NOT NORMAL". Needless to say, the second shot worked even less effectively - lasted barely 2 months, when they gave me a THIRD (and unscheduled) shot to try to cover the full 6 month period. When I nervously tried to question my dr about the efficacy of continuing the route when it seemed to me to have already reached a failure point, I was TOTALLY BLOWN OFF. Frankly, I don't know if she didn't care or didn't know any better. Really, it doesn't matter though. The bottom line is that the treatment didn't do anything and she was not willing to change her "standard" course of treatment because it "worked for most people".

Now, many years later and working in this environment do I only feel empowered to speak up for myself. I have also decided a few things about how I treat my caregivers:

1) I always treat them with respect. Basic human respect that one should have for another human. AND NOTHING MORE.

2) They can be wrong sometimes. If I do not feel comfortable with respectfully asking questions about my own health, I NEED TO CHANGE DOCTORS. NOW.

There are also a couple of "rules" I have for myself:

1) I am THE ONLY person who knows my full health history. I feel like it is my due diligence to tell the caregiver EVERYTHING I can think of, whether or not I think it's related to this issue at hand. They are responsible for thoughtfully listening and making connections that I, as not a trained medical person, cannot.

2) I am THE ONLY advocate for my own heath. And since my health DEPENDS on their knowledge and willingness to treat me, I must push for any issue that I am not comfortable with the outcome of. A person simply HAS to stand up for themselves and not allow caregivers to intimidate or bully them into something that the patient is not comfortable with. My favorite example of this is historically when people drew blood from me. Conversation used to go like this (me) "is there any place other than my arm you could draw blood from. I have really hard arm veins to get". (nurse). "WELL, you just haven't had ME draw blood before. I then would kowtow and it would take said nurse anywhere between 3 and 6 pricks in my arms before a vein was successfully hit and blood was drawn - with them getting more flustered each time and saying - as if I didn't know - "you have really hard arm veins to get" - no $h!t sherlock!! I would then go home and have bruises from the efforts. One day, I had Nurse Perfect though. I told her the same thing. But her response was different. She said "then you should just tell people to take it from your hand instead. you have good veins there". And she proceeded to draw from my hand. Successfully. In a single prick. I think what stuck with me so much was that I'd been asking the nurse permission to deviate before and now I'd suddenly been given permission to "state my request" instead of "plead my case". Now, every time I have blood drawn, I state, very nicely "Please draw from my hand". But I make it a statement rather then a question. And the nurse doesn't question it, they just do ask I want.. Only a couple times has a nurse said “why?” And I say “because it usually takes people 3-6 tries to get a vein in my arm and one prick in my hand hurts less than 6 in my arm”. One had the audacity to come back with the “well, you haven’t had me”, to which I replied “No, and you haven’t had my veins either”. Case closed. I didn’t offer an arm, only a hand and she had no choice.

Bottom line ladies – YOU MUST GET A BACKBONE when it comes to something as important as your health. You can do it nicely – and figure out what works for you. JUST DO IT.

Sorry for the mile long response – I just really felt like I needed to say it all. Thanks for listening!

MultiplesMommy said...

I used to have the same problem, and am slowly overcoming it. I found that 2 things help...one is the doctors themselves. I used to have doctors who would stand with their hand on the doorknob the whole time we talked, and I always felt hesitant to ask all my questions because it was clear I was "holding them up" from something more important. Not logical, obviously, but I too would get tongue-tied. I finally found an OB, an internist and a rheumatologist (for my fibro myalgia) who all take the time to actually sit and talk with me. They don't act like they can't wait to get out the door, and are always willing to answer questions, either in person or on the phone. Even though we moved about 18 months ago, I've still kept the same doctors. It's worth a 45 min drive for me to go to people I like, and ultimately, trust.

The other thing I now always do is prepare a list of questions and/or topics for discussion before I go to the appt. If nothing else, it gives me something to focus on. When I feel like I'm getting tongue-tied or that I'm just going to bypass some issues so as not to take up the doc's time, I force myself to consult the list and address everything on it. I find that I come away with a much better understanding of things oftentimes, and I feel less rushed and intimidated. Try it!

mommypie said...

My problem is I tend to over-research possible ailments. In doing so, 7 times out of 10 I'll have a pretty good idea what's going on. Truly. When I tell the doctor what I think is up, I feel like they look at me like I'm a crazy person. Like, in their head, their thinking, "Why would a non-doctor know anything about this subject? Why is she using the medical term 'sepsis?' She's obviously a hypo."

The thing that's changed everything for me, and this sounds totally sexist, is ONLY going to female physicians. I just feel like they actually LISTEN. Maybe I've just had rotten luck with male physicians but the ones I've had over the years always had one eye on the clock, and seemed like they could care less what I had to say.

Purple Teacup said...

Well, I happen to interview my doctors, and if that doesn't work I tell them I was a biomedical science major (true, but not finished) and then in extreme cases I tell them my father is an acupuncturist (true) and will do his voodoo magic of they don't listen to me. Or I am just an assertive bitch. =)

MIQuilter said...

I, too, only go to female doctors because I feel they more typically listen. However, the dr that gave me those "lovely" hormone injections was a female... so it's not always a guarantee.

 

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