Medical Self-Advocacy: Why it Is More Important Than Ever

By Deann Zampelli   |   March 12, 2024

A few months ago, I had a diagnostic test for some G.I. issues. Just to clarify, that was not referencing a broken romance with a soldier on leave, but gastrointestinal issues. A little less sexy. 

I was introduced to my doctor about ten minutes before the procedure. As I always have a million questions, I was happy to finally get to meet her; why I hadn’t met her prior to this is a story for another day. After exchanging a few words, it became clear that she wasn’t interested in answering my questions. She wanted to chat with her colleague, anesthetize me (not an uncommon response upon meeting me, from what I understand) and do her 15-minute gig. Just before I went under, I asked her what she thought about two seemingly unrelated symptoms I had been having. She looked at me with the most neutral expression I had ever seen and uttered a phrase not commonly used in her profession, “I don’t know.” Now, on the one hand, I applauded her for her honesty. But my real concern was that it wasn’t followed up by any intellectual curiosity. “I can check into it.” Or, “It doesn’t sound like it, but I can do some research and get back to you.” I wasn’t asking if a cell tower in Dubai might be the reason my manicure doesn’t last as long as it used to. It was a valid and somewhat insightful (if I do say so myself) observation. As I waited for her follow up response, the drugs kicked in and I fell asleep with quippy and acerbic responses in limbo on my fuzzy tongue. 

After speaking with some friends, I began to see a pattern emerging in the interactions with medical experts. Each one felt a little like going to battle. We would leave home with notes and files filled with details of every procedure and diagnostic test we had ever done. Armed with information and determination. Yet no matter how prepared anyone was, each found themselves leaving the appointment with unanswered questions. 

This got me thinking. If it happens to me, a research fanatic/Health Coach whose middle name is Advocacy, how many others are experiencing the very same thing?

I have quite a few friends and family members who are doctors and understand the pressure they are under to see everyone in a day and greatly appreciate the work they do, so this isn’t an attack on the medical profession. This is a call to advocacy. Self-advocacy.

When I was in my health coaching program, I remember hearing a statistic that most Western practitioners spend an average of three minutes listening to a patient before offering a diagnosis and a treatment plan. While I don’t know if this is accurate, I will say that it can be challenging to be heard. Really heard. 

Many people get anxious at even the idea of going to the doctor, so much so that it can alter their vital signs (a.k.a. The White Coat Syndrome), while some get intimidated by authority figures and others are just fatigued and overwhelmed. 

With this in mind, I have come up with a simple plan to try and prevent this from happening in the future.

1. Go in with a list of written questions. The most important ones first in case you do run out of time. Do not move on to the next one until you are comfortable with the answer from the last.

2. You guide the appointment. This is YOUR time. You can do it in a kind and respectful way, but be clear as to what your needs are. For example, this is mine, “I have quite a few questions and want to be clear on each point before we move onto the next.” If they get tetchy with me, I pretend I am Olivia Pope from Scandal about to tell them why they are going to do it my way and why they will regret it if they don’t.

3. Take notes. You might think you are as clear as day on what is being said, but depending on the nature and seriousness of your visit, there is a good chance you will forget something.

4. If possible, bring someone with you. Two people hear information better than one. Especially if this is a stressful time or you are suffering from a serious illness. The human mind can only take so much in at once.

5. This is a big one. Before the doctor leaves the room, tell them you want to go over your list again (at your own pace) to make sure you got all your questions answered. Doing this can give you a chance to take a breath and may uncover a few more questions. Don’t feel bad about asking them. Remember this is YOUR time, and it is just as valuable as theirs. You are not a bother, a nuisance, or an inconvenience. This is the reason they come to work each day. To help us.

Health practitioners can be the most knowledgeable in their field, but until they remember (or learn) how to really see and hear their patients, they will never be true healers. Through self-advocacy, we may be able to change that.

I recently came across one of my favorite quotes by the late Vietnamese peace activist, Thich Nhat Hanh and it never seemed more powerful than it does now. “The most precious gift we can offer anyone is our attention.”  

 

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