So.
Doug and I have grown three pretty amazing people. Mostly by luck, but we’ll take credit for having introduced them to good music and the great outdoors, and for teaching them to cook and to change a tire.
One of the best side effects of growing these people is that they end up finding other amazing people and bringing them into our lives. They’ve brought us a nice bunch of extra humans to love.
One of these delightful bonus kids is Caroline, a brand-new college graduate with fantastic culinary, percussion, and theatrical skills. She is also a writer. Her latest blog post deals with sensitive personal medical issues and she does an excellent job of explaining the clinical aspects. Her account is raw and honest. She also touches on doctor-patient relationship and communication issues, and she has kindly given me permission to weigh in on these. (You can read her post here – you’ll want to keep that tab open so you can click through and read more of her posts later – she’s a great storyteller).
Dear Caroline,
In your post, you share openly about experiences with very personal gynecologic issues, and in doing so you give other people the power of knowledge to seek help for themselves. You describe some interactions with doctors that are far from ideal, far from helpful, and which need to be addressed.
One can read what’s behind your words. Your title: “My Vulva is Melting (And Yours Might Be, Too),” was developed because of the shock/impact your physician’s specific word had on you. You put a picture of a slightly melting ice cream cone in the part of your story where you relay your doctor’s words. And you repeat the word “melting” a few different times. It obviously (and understandably) disturbs you.
Doctors learn a whole language of medical terms. We learn to speak precisely with this language. And then we learn to translate it back into language our patients can understand. Sometimes the translations leave something to be desired. What your doctor was describing is called “adhesions” – tissue can adhere to other tissue and become permanently attached. This is what your doctor meant. By trying to simplify medical terms, your doctor conveyed a confusing and upsetting image. Thankfully she was later able to explain what she had meant, and I am glad that she is helping you deal with your medical issues.
Several parts of your story hearken back to experiences with prior doctors, ones who do not seem to have been successful in positioning themselves as listening, caring, medical professionals who were in your corner. This is not to say that they weren’t, but they did not succeed in convincing you that they were.
When you describe an episode in high school in which mononucleosis caused gynecologic symptoms, you describe your doctors as not believing you (they were sure you had an STD even though you had told them you weren’t sexually active). You put a GIF in your post describing doctors as sadists who like to watch lesser people scream, and the caption of that GIF describes the physician doing a procedure roughly, as if to be punitive. It was humorous – you frequently use humor in your writing, and it’s humanizing and wonderful. But there are elements of truth behind much humor, and I worry that you thought a doctor was trying to hurt you or didn’t care that they were causing you pain.
I believe fully that this was your experience. And I highly suspect that this was not what was in the brain of the doctor.
My medical school class had 300 students. I knew most of them. One was an irredeemable asshole. The rest genuinely were there because they wanted to help people, but some didn’t have the best communication skills. I have found a similar pattern among the practicing physicians with whom I have worked. In fact, the doctor assholes are generally assholes to other doctors who they believe are not doing the right things for their patients. The overwhelming majority of doctors really do care about and want to help their patients, and they dedicate an enormous proportion of their lives to doing so. But sometimes they suck at parts of it.
Doctors are trained to look at signs and symptoms of a patient and synthesize everything they’ve learned in in-depth academic and clinical courses to come up with a differential diagnosis – a list of things that could be causing a patient’s presentation. Docs are taught that, in general, hoofbeats mean horses, but occasionally there’s a zebra. If it looks like a duck and quacks like a duck, most of the time it’s a duck. But not always.
If a doctor suspects an STD in an adolescent, it would be gross malpractice not to test for one, no matter what the patient says about risk factors, because missing that diagnosis could result in irreversible long-term sequelae, such as permanent infertility. Or severe systemic infection. And, for a variety of reasons, people frequently don’t give their doctors the full story (and a large proportion of sexually active teens deny sexual activity if they think their parents could find out). It’s simple to check and rule out an STD that could have potential devastating consequences. But that needs to be done in a way that respects the patient so that she feels she’s believed and listened to. “I know you told me that you’re not sexually active and I believe what you tell me. Because this looks so much like X, I’m going to test for it even though the fact that you’re not sexually active makes it very unlikely. I am looking for other causes, too, and I need to be complete.”
As far as the rough, painful specimen collection, there is of course a chance that the gynecologist was a sadistic asshole. But the far more likely scenario is that the doctor had not established trust and didn’t talk you through the procedure. I suspect it would have made a difference if the doctor had said, “Those ulcers are probably quite tender, so when I swab them to send some cells to the lab to figure out what it is that’s causing this, it’s going to hurt. I am using a soft, cotton swab, and I will be as gentle as I can be, but it may feel to you like I’m using sandpaper. I’m sorry that this is painful – I want to figure out exactly what this is so I can help you get better.”
In describing seeking help from a previous gynecologist for symptoms related to your new diagnosis, again there seems to be a deficit in communication. It seems that the doctor may have only been suspecting horses of making the hoofbeats, or at least the doctor didn’t let you know that other causes were being considered. It’s the doctor’s job to come up with the differential diagnosis, but sometimes it helps if a patient asks, “what else could this be?” – then you know what else, if anything, the doctor is thinking about.
When you reported to that doctor that you had pain during sex, the doctor made sure to tell you to stop your partner if you were in pain. Your response in your piece (not to the doc) was the equivalent of “no shit, Sherlock.” Yup. It’s all well and good to advise a patient not to do something that causes pain, but if a normal activity causes pain, it needs to be evaluated thoroughly. A reported symptom needs to be addressed. Perhaps your doctor would have investigated further had you not politely let it go when you received a “’Doc, it hurts when I do this,’ ‘So don’t do this’” message – a request for more thoughts might have prompted more response. “I of course stop when it hurts. But it’s not supposed to hurt. I’m not doing anything rough or unusual. What are your thoughts about why I might be having this pain?” might help a doctor who’s overwhelmed with patients stop for a moment and really focus on the one in the room. (Please note – I’m not at all “victim blaming” here – it’s absolutely the doc’s job to do all this anyway, but doctors are under significant pressure and sometimes a gentle nudge goes a long way).
Your advice to your readers is to listen to their bodies and investigate anything that seems abnormal for them. You balance this with a caveat against self-over-diagnosis. I second your advice wholeheartedly. Advocate for yourself. Don’t walk out of your doctor’s office if you don’t understand what was said to you (by the way, I’d be happy to discuss ureaplasma with you), or if you don’t think your issue has been heard and addressed. There might not be an immediate answer, but there needs to be a plan in place to find the answer and address the issue.
I also highly suggest that those on their way to becoming doctors listen to these stories. They need to hear their patients. They should be writers themselves – understanding the importance of words, understanding the importance of pictures, and always thinking about how their patients may be hearing them.
Thank you, Caroline, for sharing your stories. People are learning more from you than you know.