The Importance of Being Your Own Advocate (or that time I asked the nurse if orgasms were contraindicated)

I found out that I might be having surgery in January. I finally ended up at the Urologist’s office after months of funky symptoms and prescription after prescription for antibiotics. At that appointment, I got registered as a new patient, saw the doctor, had an exam, discussed a provisional diagnosis, was referred for imaging, and discussed possible surgical intervention and recovery. This was all before my diagnosis was confirmed. This was also the first and last time I saw the surgeon.

It is now April and I have eagerly been awaiting my pre-op appointment. I have a list of questions: How much bleeding is normal? How will the catheter attach to my leg? Are they going to remove any hair for the surgical procedure? How long until I can have sex? Are all orgasms out or just ones combined with penetration? Can I lift weights after the surgery with the catheter in? Are there any precautions for going to the bathroom? Before the appointment I am imagining that this pre-op appointment will include post-surgical instructions, consent forms, and face to face time with the doctor. What it actually involves is 50 minutes of waiting to get registered, signing of some forms, and speaking with a nurse who offers no information, and non-specific answers to my questions.

In PT school we learn a lot about ways that we, as medical practitioners, can provide interventions to our patients – basically, how we can make a difference in the health and lives of those that come to see us. Physical therapists learn a lot about providing manual interventions (hands on treatment), therapeutic exercise (movement prescription), neuromuscular re-education (improved timing and recruitment of muscles), and we learn A LOT about patient education. It may or may not be surprising – an intervention we spend a a large chunk of time learning to provide is how to effectively give patients information: about the plan of care, the cause of their pain, and about their health. To me, this is a non-negotiable part of healthcare, more important than just about any other intervention. So you can imagine my frustration when I was offered no information about potential surgical outcomes, risks, or expectations. And when I asked specific questions, I got non specific answers that sounded like they had question marks at the end. Example: me: “Can I lift weights with my arms while I have the catheter in?”
her: “Well, I wouldn’t? maybe take it easy?”

Telling me to take it easy doesn’t sound like bad advice – there could be perfectly valid medical reasons that I shouldn’t lift weights while I have an incision that’s healing. There could be a blood pressure risk or an increased abdominal pressure risk, for example. But just telling me to “take it easy” doesn’t give me, as the patient, any control over the situation, nor does it give me any information with which I can make an informed decision about my daily activities. It also misses an opportunity to connect with me, as a patient, to learn about my values or to build trust. I left that appointment seeing red and strung tight like a rubber band.

After talking about it with my boyfriend, and my mom, and some of my classmates, and anyone that would listen to me go on a 10 minute diatribe about the importance of patient education, I called the nurses line at my doctor’s office and left a voicemail that said I had questions and asked for a return phone call. I finally got a call 6 days later, after leaving another voicemail, negative feedback via the office website’s contact form, and sent an email to the office manager.

Let me tell you, at no point did I not simultaneously feel self-righteous and absolutely batty. I am not, by nature, a complainer. I am a “smile and solve the problem-er”. I am a “make peace for the sake of peace and try not to make other people’s lives more difficult-er”. Except when it comes to other people – then I have no problem advocating. I know this isn’t unique; how often do we go to bat for other people, but let our own needs go unmet? While it might be okay to ignore the fact that your order is completely wrong at a restaurant, or you might grin and bear it when someone yells at you undeservedly, when it comes to your healthcare, this is not the time to prioritize making things easier for other people. There aren’t that many things people just happen to deserve in life, but good quality information about their health and healthcare is one of them. Something I have only grown to appreciate from being a patient is that when it comes to healthcare is that while it is your provider’s job, it is your life.

I talk a big game, but let’s be honest: at no point did I let loose a fit of righteous patient advocacy rage. When a nurse finally called me back yesterday, I asked her all of my questions, snuck in an unnecessary and feeble apology “I’m sorry to have so many questions, I was just looking for a way to calm my anxiety before the surgery”, and thanked her profusely (I’m so strong and intimidating). This self-advocacy stuff is hard work, but it’s completely worth it. I still have a couple of questions that only the surgeon can answer, (what do you consider a successful surgery? when can I get the catheter taken out?) but immediately after hanging up the phone yesterday I felt a wave of relief. I guess standing up for yourself is like any other skill – it takes practice. I may not be great at it yet, but who knows? Maybe one day I’ll get up the nerve to actually send the wrong food back.