Learn to Advocate for Yourself
A Guide from Someone Who Grew up in the Medical System
by Rebecca Wagoner
Going to the doctor’s office never ceases to be nerve-wracking. The anxiety that vibrates in your stomach can be worse than what’s actually ailing you. Raise your hand if you’re a worrier. Yeah, both my hands were up too.
With the recent pandemic, it’s no surprise that health is at the forefront of everyone’s minds. As it should be! Our health affects our quality of life, and if you’re anything like me, then you’re constantly looking for ways to increase your happiness.
I was born with bladder exstrophy which means that my bladder developed outside my body, but I was a bit extra even when I was little and my bladder was inside out as well. This deformity is very rare; only one in every 400,000 females are born with this and only one out of four children who have it are female.
Hopefully, the lessons I’ve learned the hard way will help you navigate the medical world and get the best possible care.
My Most Important Rule
Doctors work for you. It’s as simple as that.
Going to the doctor is just like hiring any kind of specialist — you are hiring them for a service that they can provide. If they aren’t delivering what you expect from them, guess what? You don’t have to go back to that doctor.
What I mean by expectations isn’t just that you disagree with the diagnosis. I mean how they treat you, how they talk to you, are they explaining their findings, and why they came to their conclusion.
If they aren’t taking the time to talk to you and treat you, and not just your symptoms, then they shouldn’t be your doctor. Remember that you are paying for their service and expertise.
When I was very young, about three years old, my mother took me to see a specialist in Urology at Stanford. She was the best in the area, and heck, it was Stanford, she should be fantastic, right?
I had been seeing her since I was born, basically. After this specific visit though, my mother decided to ask for a second opinion.
Here are the two main reasons she had for doing so:
1) My mother told her how we had been doing since we last saw her, explaining that I could feel when I had to go and would run to the restroom and hold it until I got there. My doctor told her that wasn’t possible and that my mother was just seeing what she wanted to see. My number one issue with this: how can that doctor say that it’s not possible? Was she there to see it? No.
2) She insisted on scheduling a surgery that would alter my quality of life for the rest of my life, as it would be irreversible, and insisted on scheduling it within the next two months. What she neglected to tell us was that after my surgery, she would be on sabbatical for an entire year.
Again, just so many things wrong here. She didn’t respect my mother enough to tell her that and she clearly didn’t care about my well-being. Who would be able to help me if the only doctor around that specializes in my birth defect isn’t available? We left that day and my mother, thank goodness, decided that we weren’t going back.
Doctor Jargon
If you don’t understand what your doctor or nurse is saying because they are using too many complicated medical terms, don’t be afraid to ask questions. You shouldn’t be leaving the office with more questions than when you arrived.
Take the time to ask what specific words or terms mean. It only adds 10 seconds to the conversation for them to break it down for you. It’s their job to tell you what your ailment is and how they plan to treat it. If you leave and still don’t know either of those things, then they are not doing their job.
Again, it’s as simple as that. It’s called their bedside manner, and although it seems like they should have had a lot of practice with speaking to patients, it doesn’t always mean they’ve mastered the ability to not be condescending.
When I was a teenager I had a bad habit of listening and nodding along as doctors explained things, but I wasn’t really listening. My mother was always there and I could rely on her to explain what different things meant after the doctor left the room.
When I was in my twenties and away at college I began having more problems again and started seeing a doctor at UC Irvine. I was thrust into the position of not knowing what was going on and I finally had to ask for clarification from the professional.
The first time I did it, I felt so stupid. I’ve had medical problems my whole life and I couldn’t follow what the doctor was saying. I had to push past my feelings and social anxiety to voice my questions. Once I began doing that, it was a stark difference in my understanding of what was happening to me. Simply understanding these terms and diagnoses enabled me to make informed decisions regarding my health and the treatments that were available.
Listen to Your Body and Speak Up
Make sure you are paying attention to your body and tell your doctor what you’re experiencing to the best of your ability. They aren’t you — only you know how you are feeling.
When I was 11, I had major surgery on my bladder, and for about six months afterward, I had recurring kidney infections. At that age, I didn’t know how to describe what the pain felt like when they asked. I learned that pain can be a dull ache, a sharp jab, or what I liked to call “sparklers.”
If you tell your doctor that you’re in pain but don’t tell them what kind, that leaves the possibilities quite open, whereas having that specific kind of pain narrows down what could be the issue.
Only you know your body, only you are living in it. Even if you feel silly, take the time to explain what’s going on to your doctor. It could be helpful for your overall diagnosis.
You Are Not a Cookie-Cutter
Yes, you read that right. You are not a cookie-cutter. You are not the same as me or your childhood friend or even your parents. There is no end-all solution that works for every single person — just like how one pair of jeans won’t fit every person who tries them on.
Here’s another example using the doctor I saw at Stanford: she was treating me the way she believed she should.
First, she usually saw male patients because it’s much more common in boys. Secondly, this isn’t a common birth defect, so even though she’s a urologist, it wasn’t common to treat in general.
We finally got the second opinion, after flying up from Santa Cruz, California to Seattle, Washington. My mom had found a children’s urologist who not only specialized in bladder exstrophy, but also in female patients. He took the time to explain to us why the doctor at Stanford believed she was right. She was following what any current textbook dictated her to. The medical field is always advancing, always moving in a constant state of enhancement. For her to be going by what a textbook told her to do meant that she was already behind on new discoveries and processes.
And this brings me to my next point...
Get a Second Opinion
If you feel like you need one, or just plain out want one, don’t be afraid to get a second opinion. Don’t feel like you have to stick with your current doctor; they should actually encourage you to feel empowered to get another professional opinion.
Sometimes a second set of eyes is exactly what you need. It’s the same concept as writers turning in work to editors. The second opinion will either confirm what they’ve already found or have new ideas on how to treat it.
My mother already knew she didn’t want to take me back to Stanford, but when the Stanford doctor discouraged her from getting a second opinion for me — telling my mom that her planned treatment for me was the only treatment — it was cemented.
Again, there was no end-all cookie-cutter fix. There had to be another way to treat this.
When we got a second opinion (surprise, surprise), the doctor in Seattle recommended an entirely different plan of action. If we hadn’t gone to see him, my entire life would have played out differently than the way that it has. And my quality of life, quite frankly, would be really crappy and pretty miserable.
Hold Them to a Higher Standard
You should absolutely be holding your health professional to a higher standard. If you don’t and they make a mistake, it could be detrimental to your health. This is so important, which is why I am ending with this one: I 100 percent believe that doctors who screw up need to be held accountable — they literally have your life in their hands.
Because I have so many examples to share, I am choosing this drastic one to demonstrate how little mistakes or doctors’ amounts of care can impact your life.
During my first year after college, I was working two jobs so that I could afford rent and I was still barely scraping by. At the same time, I was seeing a urologist at UC Irvine. I had been excited to start seeing this doctor because she knew what bladder exstrophy was and had studied it, which is so rare. She was even excited to have a patient with this defect.
It took me a while to realize that she was putting me through all kinds of tests that I didn’t actually need because she wanted to explore and see what had been done to me in the past.
Keep in mind that I was taking time off of work to have MRIs and ultrasounds and cystoscopies done — and then had to pay for them.
After one of these unnecessary tests, I contracted a Urinary Tract Infection (UTI). Again, my body likes to be a little extra, after years and years of kidney and bladder infections and treatments, so my body created its own strain of the infection. Without taking the time to see me or check my sample to determine the type of strain, and thus what type of medication to prescribe, my doctor prescribed something that didn’t work.
I was out of work for about four weeks. The medication would attack my symptoms and make me feel better but didn’t attack the actual bacteria, so after I finished the medication, the symptoms would come back full force.
I tried calling my doctor several times; she never answered. When I left messages with the nurses, she never called back. In the third week with my third round of the same medication, I called my regular doctor and told her what was going on. She took the time to see what strain it was from the sample, researched the proper medication for me (it was a really old one that isn’t used anymore), and one week later, I was back at work.
Take a wild guess: did I go back to my doctor at UC Irvine? Hell no. My mother was so enraged by my treatment that she wrote a letter to the doctor (as well as her immediate superior and the hospital’s board) firing the doctor from my care and calling out her unethical behavior: I was paying her to be a patient, not to be her guinea pig.
Final Thoughts
Standing up for ourselves is hard and asking for help is even harder. Going to the doctor’s office is the first step to taking charge of your health — you should never feel belittled or spoken down to.
Your health professionals should actively listen to your concerns and consider how any treatment plan will affect your lifestyle.
You should be empowered to ask for a second opinion if you feel you want one. Don’t be bullied into taking tests or treatments that you don’t want just because it’s easier than questioning them. Don’t take everything they say for granted.
Remember that you are your own person and you are not the same as the last patient they just saw. Push past feelings of anxiety and tell them what you’re experiencing; the more detail the better. Stay happy and healthy, friends.
