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.
2. DO YOUR RESEARCH before and after appointments!
3. Keep a journal full of notes and questions for your doctor's appointments.
4. Learn what it means to be an informed consumer, and enact these practices when making any health changes
5. Share your story with others. The power of narratives can be cathartic for you and help others feel empowered too!
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!
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