Let's Talk Advocating: YOU Have a Say in Your Medical Care
Last updated: November 2022
When I first planned on writing this article I had every intention on speaking about how important it is to advocate for yourself and how that has been probably the hardest lesson I have had to learn since being diagnosed with epilepsy.
Since I started brainstorming for this article, though, I was admitted to the hospital for a blood infection and have had to do some of the hardest advocating for myself in a long time. And honestly, it is exhausting. It also gave me perspective. We all know we need to advocate for ourselves. I mean, I see chronic illness patients post all the time about advocating, the importance of it, and steps to take to help you advocate for yourself.
While I find all of that important I have recently realized that it is so much harder to do when you are in the moment.
You are the one living with epilepsy
Many doctors – not all – have a mindset that whatever it is you are coming to see them for, they went to medical school to master, and you did not. Therefore, they tend to be under the assumption that they know better than you. If I can give you one piece of advice that you take with you to every doctor's appointment you have it would be this: YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE.
Science and medicine are always changing and evolving and new studies are being presented constantly. So in reality, it is impossible for a doctor to say that they know all there is about the human body or a particular ailment. And the good doctors are the ones who admit that to be true.
When I first started having seizures in 2014 I was a relatively healthy college student. Each year since 2014 I have been diagnosed with a new chronic illness, and surprisingly, many of them were only diagnosed through advocating for myself.
Sometimes when you go to a doctor and you have a chronic illness any other symptoms you present with will be worked up under that same diagnosis. This is not to say that doctors knowingly ignore their patients' concerns, but I have learned that many doctors look at a patient as one symptom or diagnosis and not a whole system.
4 steps to be your own self-advocate
Alright, let's talk steps for advocating for yourself in the moment – because that is what I have found to be the hardest!
1. Write down notes before you see any healthcare professional.
If you are anything like me I tend to clam up when a bunch of doctors do their rounds on me while I'm in the hospital, which often leaves me with no voice or say in my own treatment plan. So have notes ready and available to read from!
2. Have backup!
Different settings can allow you to have different types of support with you. But if you feel as though your voice is not being heard then that is your sign to bring in backup! In the hospital setting, that could look like a nurse who you trust, a family member or friend, or even a patient advocate.
During my most recent hospital stay, I had to bring in all of my backups. My nurses have spent entire shifts contacting their nurse manager about situations happening, my mother-in-law has come to see the doctors on multiple occasions to raise her concerns, and we even involved patient advocates and hospital administration. My biggest suggestion is to not let them overpower your voice. You have a say in your treatment plan and what you are comfortable with.
If you feel like you have done everything you can to advocate for yourself and you feel like a doctor is still not listening, then at this point, your most important next words will be, "I would like you to note in my chart that you are not willing to do..."
This allows documentation to be made that you have asked for a certain test, to try certain medications, to be referred to a certain specialist, or whatever it may be, and that your doctor is simply refusing to do so. Some, not all, doctors would rather just do the thing being asked then put that in your chart. So you may see them change their mind once you ask for it to be documented.
4. Get a second opinion
It took me a long time to realize that I could in fact fire my doctors! Just because that is who you are referred to, who has been assigned to your case, or who walks in your room does NOT mean that it who you have to see.
If they are not taking you seriously or considering what you are trying to say then you have every right to tell them that you would like another doctor. Or in some cases, you do not even have to tell them. You can find another doctor within that specialty and sign on as a patient with them. This is not always the easiest option for general/specialist doctors because many times you need a referral, but it can be done with a little bit of extra work.
You should have a voice in your epilepsy care
I believe it is important for you to know that you have a say in your epilepsy care and treatment plan. It is important for you to know that when you are too tired to advocate for yourself there are people who can and will advocate for you. When you are at your wit's end, just know there are other options available to you.
This journey is hard enough without feeling like you are in a constant battle against medical staff. So do what is best for you. And please remember: YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE!
Do you have epilepsy? Or are you caring for someone with epilepsy?
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