On Being A Patient
In response to my recent post on being mauled by the PA at my annual gyn exam, reader Danimal was moved by my saying this
I say if it hurts, you should feel free to yelp. And no doctor or PA should be shushing you. I am ashamed to say that when my PA shushed me, I let her make me feel embarrassed, and I actually apologized to her. That is just messed up.
You disappoint me Zuska. On the bloggesphere you have no problem barfing over someones shoes, usually when appropriate, including mine. Yet here it was entirely appropriate, yet you did not. Come on, you can do better.
This prompts me to make some observations about what it’s like to be a patient, specifically a female patient, observations garnered by someone who has spent a great deal of time in the past six years in and out of a depressingly large number of doctors’ offices.
In the most recent instance, I was lying on my back, naked except for the fiction of a thin paper gown that didn’t close in the front and another paper sheet draped across my mid-section. My feet were in the infamous stirrups, legs spread wide, a position not calculated to create a feeling of ease, elegance, and confidence in one’s self.
There are many women who are survivors of sexual abuse for whom a routine gynecological exam is a real nightmare. The position on the table, the touching that the health care provider is required to do, all can trigger frightening flashbacks. Managing that reaction may take so much of one’s strength and fortitude that little is left for other concerns. This is why I always recommend that sexual abuse survivors share their history upfront with their health care providers, so that they can be extra-sensitive during exams. A helpful technique is to ask your examiner to go slowly and tell you explicitly everything they are going to do just prior to doing it – you don’t want any surprises. You want time to think and manage the reaction. If your doctor won’t go along with this and/or isn’t putting you at ease – get a new doctor.
Anyway, there I was, naked and in the stirrups. It’s not like I was wearing a suit, sitting across a table from someone in a conference room, feeling at the height of my powers. Believe me, nobody every jacks me around in a setting like that.
But beyond that – there’s something that happens to you when you enter a doctor’s examining room. Particularly if you have been, as I have, chronically ill for many years, you come to see yourself as in a dependent relationship with your health care providers. You need them to help manage your illness and make you feel better. You want them, dear Jesus, to help you. You want to believe that they know what they are doing.
This is so even if, as I have, you have acted as an advocate for another family member in their relationship with health care providers and know that it is not in your best interests to be passive or always assume that Doctor Knows Best or to not trust your instincts. That’s why patients need advocates – because they find it so very hard to advocate for themselves.
I would never in a million years let a health care provider treat my mother the way that physician’s assistant treated me this past week. I would have said something right then and there and a formal complaint would have been filed before I left the office that day. I push doctors and office managers all the time in regard to my mother’s care. But I have found it extremely difficult to bring that same attitude to managing my own care, and Mr. Zuska has had to step up to the plate and do it for me. It’s extremely frustrating to him because he knows I know more about the health care system than he does, and he sees my aggressiveness on behalf of my mother – where does it all go when it’s time to care for me?
Patients want to be told they are healthy and/or they want to be healed. They don’t want to argue and have conflict with their health care providers. They want them to be competent and right and kind, and we will sometimes go on desperately trying to convince ourselves that they are so even in the face of overwhelming evidence against it. For many years my mother saw a primary care physician who was rude and brusque with her, who repeatedly harassed her about her children’s advocacy efforts on her behalf, and who ultimately, one day, refused to see her anymore because he said coordinating her care with her other physicians had become too difficult. (She will not go to the hospital where he has privileges because it is the same hospital where my brother was left severely brain-damaged by a botched surgery at age 17. It is more work, but not impossible, to communicate with the doctors who are on staff at the other hospital.) After all this, my mother still tells me frequently that she would like to go back to this physician because she feels “comfortable” with him.
This story highlights a fear that patients with chronic illnesses have – that we will be rejected by our doctors if we become too much trouble to them. We don’t want to annoy them by being whiny, complaining too much, acting like things hurt a lot – why, we hate to even bother them with us being sick! Because we know it is annoying to them that they cannot cure us. In my mother’s case, her PCP was actually worried that the difficulty in coordinating with the other physicians was going to compromise my mother’s care. I thought we just needed to introduce some better procedures for making sure the right information got communicated in a timely fashion. He thought she needed a different doctor. My mother ended up feeling hurt and rejected. As irrational as I know it is, in the back of my mind, my mother’s experience speaks to me of the dangers of being a complex patient who needs too much from her doctor: your doctor will throw you to the curb.
On top of all this complex behavior that patient status brings out in one, there is the problem of having been raised female. Be polite, do not complain, don’t make a fuss, don’t inconvenience anyone, be quick to apologize, try to minimize conflict and maintain relationships, remember that whatever it is, is most likely your fault, and if not, why not just take the blame anyway so as to make things more pleasant for everyone? It’s a toxic blend. So when a health care provider treats you poorly, you are just as likely to conclude that you did something wrong as you are to realize that she or he has been an asshat.
It takes a great deal of training and conscious effort to overcome that perspective; you have to be consciously ever-vigilant. Yet if you are preoccupied with thoughts like “I hope they don’t discover anything troublesome like last time I was in here” or “this exam makes me want to puke, I wish I’d just canceled my appointment” or “it’s freezing cold in here and I wish I’d kept my socks on”, concentration can be elusive.
I won’t even get into the whole shame thing about our bodies, how we are taught to feel bad about every single aspect of them, how the unavoidable weigh-in that starts the exam, with the nurse loudly reading off your weight in a chipper voice as she makes a note in your chart makes you want to disappear, how you have anxiety about your physical appearance and possible unpleasant body odors as you lie there naked with legs spread wide…
So, yes, I’m sure I could have done better. Lord knows I wish I had, for my own sake. But I have to tell you, at the time, I was just damn glad to get the hell out of there.