I've Got the Power!: How to be an Empowered Patient in Doctor's Appointments

The first time I remember leaving a doctors appointment feeling upset was in 4th grade. My scoliosis was pretty bad before my first "growth spurt" (I'm not sure you can use that phrase when referring to Italian people getting taller...) and I recall my doctor telling me that I would have to wear a back brace for a good portion of my young adult life and that I would not be able to play sports. Shortly after, I burst into tears and left that appointment full of anxiety that I would stick out like a sore thumb with a back brace on and couldn't pursue my love of sports. Thankfully, that doctor ended up being extremely wrong, as I never had to wear a brace and I grew up playing, and excelling, at pretty much every sport I played (aside from soccer... unless you consider my amazing toe-balls skillful :/).

Since then, I have had a slew of horrible experiences with doctors. I have been misdiagnosed, bounced around from office to office, dismissed, patronized, prescribed medication that gave me allergic reactions multiple times, and outright lied to. I have left doctors appointments sobbing, upset, angry, confused, and invalidated. Sure, I am an emotional person, but I can say with 100% confidence that these feelings were justified and brought on by doctors who simply just do not have people-skills.

Once I went through my IUD experience, and essentially was a zombie for five months with NONE of my current doctors able to figure out why I was literally morphing into an unrecognizable human being in front of my eyes, I vowed to kick these inadequate doctors to the curb. As such, I started empowering myself in a number of ways and took my health into my own hands. Since adapting this mindset my health has improved tenfold, and I have sped up my healing process during the most stressful time of my life ::pats self on the back::.

Even if you aren't currently dealing with a chronic illness, it's really important to develop this skill-set before an issue arises. It's hard to do research and put your health first when you're so sick that you can't think straight... Take it from me ;-) This information is also applicable if you are a caregiver for a loved one.

What I would like to cover today is what patient empowerment is, why it is important for your health regardless of whether you are currently healthy or not, and finally how we can all become our own best advocates.

What is Patient Empowerment?

Patient empowerment, as defined is "a generic term... for encouraging the active participation of patients and carers in choosing management options, including eliciting quality-of-life utilities and preferences by discussion, viewing of interactive videos, etc." (medical-dictionary, 2015). 

In my opinion, it is so much more than that, and patient empowerment sometimes cannot be quantified or labeled, it is a feeling, it is an attitude, and it can become a part of who you are. Patient empowerment, to me, means conducting research, challenging your doctor (in a polite and constructive way of course), putting yourself first in your health journey (remember my tip on learning how to say "no"?), asking questions, being fearless and sometimes pushy to get the results that you want, and ultimately, being your own advocate in all healthcare settings.

Perhaps it will help to describe what the antithesis of patient empowerment is: accepting everything that your doctor says at face-value without doing research, letting your doctor speak over and dismiss you, being afraid to go to the doctors office, not asking questions, not speaking at all during an appointment, not being responsible for your health journey, and/or not sticking up for yourself in any healthcare context. 

While the latter descriptions may sound harsh, that used to be me to a T, so I realize how hard it can be to make the shift from an inactive to empowered patient. I used to be afraid of doctors, didn't ask them the questions on my mind due to embarrassment or fear, and I ultimately blamed everyone else but myself for my illnesses. Today, I am happy to report that my attitude has shifted, and this paradigm shift is/was crucial to my healing process.

Why It Is so Important

I'd like to use an analogy here that hopefully will resonate with you all. In interpersonal contexts, we understand why it is important to speak our mind (in my case, sometimes too much... oops!) and stick up for our rights. While we may not always do that (I'm thinking of certain past relationships where I let people put me down and walk all over me...), I think we can all mostly agree upon the notion that if we don't stand up for ourselves to a bully, loved one, roommate, enemy, etc. who else is going to do that for us? We cannot count on others to constantly come to our defense. Well, this same notion applies in a medical setting.

On the other hand, while I may not be the biggest champion of today's modern healthcare professional, we do need to cut them some slack. Doctors are not mind readers. If we are experiencing side effects from a medication that a doctor prescribed yet we do not share this information, how can the doctor help? If we do not share symptoms that are lessening our quality of life, then how can our doctor help us move past them? Sharing every bit of information possible that is relevant to our health journey is a part of being empowered. 

Overall, it is necessary to engage in a dialogue with healthcare professionals, and to have a give and take, to truly be invested in our health and start to feel better. Yet, I do realize how challenging it can be to have a conversation with certain HCPs (healthcare professionals) who treat us like a number and shoo us out of their office feeling more confused and defeated than when we left. So, let's move to some steps and practices that I have used in doctors appointments that have left me feeling happy and healthy :-)

How to be Empowered

1. First, find a doctor that you can vibe with, which I admit can be quite the challenge. 

• For me, I have had people who ascribe to similar health practices and habits as I do refer me to doctors in the area. You probably have had a friend refer a restaurant, movie, band, etc. to you, so why not do the same for medical practitioners? Sometimes this may not work depending on your insurance, but it's a good place to start. You can also research doctor ratings online, yet always be aware of rater-bias and subjectivity when using these resources.

• In my mind, this is the most crucial step in empowering yourself. Think back to my interpersonal example from before - we want to surround ourselves with people who build us up and treat us well - the same notion should be applied to your doctor. Just because a doctor is amazing at what he/she does does not mean that you need to put up with someone putting you down and treating you poorly. This is also my opinion on romantic relationships, but that's a whole other can of worms...

2. DO YOUR RESEARCH before and after appointments! 

• I realize caps can be obnoxious, but I cannot stress this enough. You have to read up on studies, side effects, personal testimonials, watch YouTube videos, and more to understand what is going on with you. For me, this has been so helpful in getting better. I have read up on almost every supplement that I take, what side effects I may experience, how to combat said side effects, the science behind each and every one of my illnesses, varying opinions on diets, and more. I am a research fiend and I am better for it. Some may call my obsessiveness neurotic, but I call it productive. What's more, is that my doctors appointments are super enjoyable and fun since I can partake in the banter with my doctor instead of having to ask questions or look at him dumbfounded throughout the entire appointment.
  
• While I realize that not everyone is interested by or can comprehend medical jargon, we all have to start somewhere. I didn't know anything about Hashimoto's or heavy metal toxicity when I started on this journey, but now I can talk about these topics until I'm blue in the face. How can you expect to get better if you don't understand what is causing your body to be distressed? How can you proactively deal with your fears related to illness unless if you comprehend, at some level, your sickness?

3. Keep a journal full of notes and questions for your doctor's appointments.

• The first doctor I saw while on this quest to getting better would pick fun at me for not taking notes during appointments. He would point out that I was a student, so why wouldn't I be writing all of this information down. Now, every time I have an appointment I bring my laptop in with me and transcribe most of the appointment. This is super helpful because I have the worst memory on the face of the planet, and because then I can look back at my notes and create a plan on how to follow my doctor's suggestions.
• On the flip side, take notes on what you are doing behind the scenes so that you can report back to your doctor. Have you started a new diet? Write it down. Taking a new supplement? Write that down as well. Treat yourself like a science experiment (but don't go all Frankenstein on us...) and keep track of each and every variable (sleep, diet, exercise, supplements, etc.) that may be making you healthier or sicker. This way, you and your doctor can work together to unpack what's going on.
• Lastly, write down questions before going into your appointment. Sometimes it can be overwhelming to ask your doctor an embarrassing question in the midst of a time-sensitive appointment. If you have the questions written down, you can even just hand them over to your doctor if saying them aloud will cause too much stimulation. I promise, it is fine to ask your doctor questions, and if they meet you with a poor attitude, at least you've done your part.

4. Learn what it means to be an informed consumer, and enact these practices when making any health changes

• This goes back to my point on research. Are you taking a new diet supplement because you saw an infomercial boasting about results or because you've spent solid time and energy researching the product and ingredients? I severely struggled with this when I first started having sleeping problems. I would buy any product that even remotely was supposed to help with insomnia and I wasted so much money. I let my anxieties get the best of me and ended up prolonging my recovery timeline. Before making any health changes it is essential to do your research, talk to others, and consult with your physician.

5. Share your story with others. The power of narratives can be cathartic for you and help others feel empowered too!

• For some time I had a hard time sharing my story with strangers because it is such an emotional and life-changing one. Once I began to find my voice I started sharing my story with anyone who was receptive. This has helped me feel like I am beating my illnesses and helping others in the process. The main reason why I ended up getting my IUD out is because I came across another woman's testimonial and it resonated with me so strongly I could have written the forum post. Opening up about private details of our lives is easier now that we can hide behind aliases online, but even so, I'm thankful that so many men and women share these details, because it is has helped my healing process so much. 
• Once you are in a place of "normalcy" (I use quote there because normal looks different for everyone, especially when you live in Normal, IL ha ha haaaaaaa...) try sharing your story with as many people as you can. Even if it's just "I started taking this medication and x, y, z happened." I have had the opportunity to speak to people about the Paragard and its horrible side effects that doctors don't disclose. I know I have helped at least one person recover from IUD-influenced pain, so that to me is very rewarding and helps me stay empowered.

Okay, so I hope you all feel a bit more confident and empowered after reading this post because that was my goal :-) Patient empowerment is a skill that takes a lot of time, energy, and practice, but it is so worth developing and honing for both yourself and taking care of loved ones. 

Do any of my readers have thoughts on this topic? Have you ever enacted any of these practices before? Do you have any suggestions that I left out on how to be more empowered?

Until next time!

- Julie

References

Anderson, R., & Funnell, M. (2011, June 1). Patient Empowerment: Myths and Misconceptions. Retrieved February 25, 2015, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2879465

Patient Empowered Care: You Are At The Center | CTCA. (1, January 1). Retrieved February 25, 2015, from http://www.cancercenter.com/ctca-difference/patient-empowered-care/

Patient Empowerment - Living with Chronic Disease. (n.d.). Retrieved February 25, 2015, from http://www.enope.eu/media/14615/a_series_of_short_discussion_topics_on_different.pdf

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