The Indisputable Importance of Self-Advocacy

Jan 25, 2017 by

You can have me read this article to you instead of reading it yourself…

Or you can read it the old-fashioned way below…

If there’s one thing that I’ve learned over the 14 years since my diagnosis, it’s that there is no better way to recognize what you’re doing wrong than to see the impact of hundreds of other people doing it wrong.

When I was first diagnosed with gastroparesis, I had never heard the term self-advocacy.  And if you watched me in my struggle to figure out what was happening and find ways to make myself healthier, you’d know it!  Almost every time I should have opened my mouth, I kept it shut.  I might have had a loud internal dialogue and a lot of screaming going on in my head, but I didn’t think it was my place to express it.

In fact, I didn’t even become familiar with the concept of self-advocacy at all until I was almost finished with pharmacy school.  And it wasn’t a catchy term or concept that they taught us in class. I was beginning to see, and not like, some very big cracks in the system.  So I began to research what I was observing, and I finally dug it up – a lack of self-advocacy.

What is Self-Advocacy, Exactly?

Self-advocacy is one of those terms that is sometimes thrown around but never really discussed.  In fact, it has gained the most traction in the mental health field, because this is a field that actively focuses on teaching people to become self-advocates.  But let’s get to it.  The actual definition for self-advocacy…

The action of representing oneself or one’s views or interests

Ok, yes, that was pretty self-explanatory.  But don’t worry, I’ve got plenty to say on this one!  There are many components to being a self-advocate.

One of the most important pieces is learning to find accurate information.  This information will allow you to understand your situation and guide you in the appropriate suggestions and questions to ask.  Next up, and equally important, is learning to speak up and participate actively, even when the situation is not necessarily built for you to do this.

Additional components that are considered crucial to achieving real self-advocacy include listening, making informed decisions, selecting the right people to be involved in your care and support, and asking for help when you need it.  Each one of these could be discussed fully in an article of its own.  (Uh oh…now I’m going to have to get to work on that…)

That’s Lovely.  Why Do I Care?

All of that sounds like nothing more than a great thought exercise.  Why should you actually invest the energy and time into becoming a self-advocate?  How exactly will it improve your health and your experience in the healthcare system?

Although it is often overlooked and most definitely never encouraged by the typical physician, it is an irreplaceable and crucial component to your health management.  And I’ve got a whole list of reasons for this!

The reasons may sound logical and obvious when you read them, but the truth is that many of us never actively recognize them and act on them.  Until I began my entry into the medical profession myself, I was a poor self-advocate, and my medical management reflected that.  None of these things were intuitive to me.  It took being on both sides of the playing field for me to realize what I had been missing for years.

  • You are the only constant in your care.
    For any symptom you experience, any doctor’s office you go to, any visit to the emergency room – you are the only person that was present and involved in every single one of those events.  You are the only consistent source of information regarding what you are experiencing.  You are also the only consistent source of information for what you have tried and what you have not tried.  Simply from the perspective of having all of the information on the table, you are the only person that can make sure this happens.
  • The condition that is being treated affects your body and yours alone.
    Your understanding for what is happening to your body or what needs to change is crucial to those changes being done.  If your doctor wants you to try a medication or a new diet, you have to understand when and how to do these things or they won’t work.  You also have to understand why you are doing them, or you might give up too soon or ignore a side effect that you should not have ignored.  If you don’t ask clarifying questions and confirm that what you heard or think you heard is correct, you are the one that will make mistakes.
  • You are intimately familiar with your own personal concerns and considerations.
    If a specific diet or medication will not work for you because of something that it requires, you are the one that knows this.  If you have already tried a specific medication and it caused a severe side effect, you are the one that knows this.  If you simply cannot comply with what the doctor is asking you to do in regards to an exercise regimen because of a physical limitation, again, you are the one who knows this.  Relaying this information to the doctor is crucial in order to find solutions that will actually work for you.
  • Your health matters more to you than to anyone else.
    And with chronic conditions, your heath is often directly tied to your quality of life, which certainly matters more to you than to anyone else.  A specific side effect or symptom might be very troublesome for you even though your doctor just sees it as a number on a paper or your friends think you are overreacting.  But you are the only one that can determine if it is pulling down your quality of life, and the only one that can advocate for a positive change.

The sad truth is that our healthcare system is not perfect and neither are our physicians.  But the good news is that you and I actually own the ability to plug many of the holes in the system simply by arming ourselves with knowledge, gaining confidence from that knowledge, and representing ourselves in every situation.

The steps to becoming a strong self-advocate can be found here.  We also have some great discussions on other topics, like simplifying your health management, and why more is often not better.

Or you could take this opportunity to make a clean exit. You’d sign up for the newsletter first, though, right?  😀

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