Advocating for myself in our modern day healthcare system has been pure chaos and, unfortunately, very expensive. On one hand, sometimes women are not taken seriously with their health concerns. On the other hand, sometimes we just don’t listen to ourselves.
That is why I have made it a priority to self-advocate at doctor’s appointments. Unfortunately, it was several bad experiences that made me finally realize this. Here are a few ways I finally stick up for myself and my body in the healthcare system.
But first, some backstory…
Since I was a kid, I was constantly going in and out of hospitals and doctors offices. I was living with infections my body could not fight off without max doses of antibiotics. I would get rashes all over my body, my hair would fall out and I just lived with it because I had no other choice.
As I grew older, my health got worse. Thus began my journey of learning just how messed up our healthcare system is. So I’m going to tell you a little bit about my story and how I’ve learned to advocate for myself in a system that is not meant to help people like me.
My reality is that I’m 27 years young, look very healthy, yet have these weird health things happening that severely lower my quality of life. Test results come back abnormal, but 9/10 times physicians write it off as something I shouldn’t concern myself with.
Sometimes, they will even hand me a new medication when a symptom gets bad enough and I need immediate care. This is all because I look healthy and how our healthcare system is rooted in fatphobic ideologies. Because I’m thin, I still benefit from the system.
I have a unique experience with this. I was going through an eating disorder recovery and had gained weight quickly out of necessity to IMPROVE my health. Still, I was constantly told to lose weight and my health would most likely improve.
Everytime I see my existing doctors or new doctors I’m referred to, I leave the appointment feeling like a hypochondriac or psychologically crazy.
When in reality, I’m legitimately dealing with a lot of unexplainable health symptoms or signs that interfere with the quality of life I know I could have and deserve. Sadly, our healthcare system is not built for people with any sort of autoimmune deficiencies.
The most recent story is that my doctor thought I had Lupus for a year. After being on medication for it to manage flares throughout that time, it turns out I most likely don’t have it. This obviously brought up a lot of feelings for me. One being, “Well, I told the whole internet I had it because that’s what my doctor said and now new doctors are telling me I don’t have it. What do I do? ” lol.
I feel guilty, almost like a fraud, because a lot of people have followed me on my “Lupus journey”. Everyday I remind myself that what I’m going through and how I dealt with and am dealing with this is not my fault. Because the truth is, over 50% of people with any sort of undiagnosed autoimmune conditions get misdiagnosed many times before finding out what they actually have.
But my overwhelming feeling is dread, because I feel like I’m back at square one. And square one is a lot of re-explaining things, getting off of medications that I never needed, spending a lot of money, and worst of all, doctors’ unwelcome body language that says they are inconvenienced and have better things to do.
Something that does give me hope though, is how I advocate for myself OUTSIDE of the healthcare system. Because unfortunately the only way I’ve been able to see any sort of relief or progress is by speaking to others who have gone through similar situations. Hearing what they have done to help themselves.
This helps so much because I often feel so alienated. If you are reading this and you feel the same, I need you to know that you are not alone. There is a huge community of people like you and me ready to support you.
What I do to self-advocate at doctor’s appointments
Write it down
Record a thorough list of symptoms/signs you are experiencing so you don’t have to explain yourself over and over again. I made my own symptom list and it’s wild to look back on everything I’ve gone through. No matter what, I’m advocating for myself the whole way through.
Listen to your body
The hardest one of all. This takes a lot of time and patience to learn. We live in a society ruled by capitalism where we are told we are unmotivated if we aren’t in constant burnout.
Remember, you know your body better than anyone. It’s important to hear what it’s trying to tell you.
Eliminate food elimination diets
DON’T automatically resort to food elimination diets, weight loss supplements or extreme workouts. If a physician tells you to manage your weight, please pick a different opinion.
From my experience and many other peoples experiences, doing that has caused worse damage to long term health. Eat soul and body nourishing foods, and move your body in ways that bring energy and happiness into you.
Talk to someone
Whether that is in therapy or being involved in online support groups, I promise it helps. Taking care of our health is a very daunting task in and of itself. Doing it by yourself only makes it more difficult.
Also, voice your concerns if you have them. If you are worried about starting a new medication, you don’t feel heard by your physician or you are feeling overwhelmed, tell them. Don’t be afraid to ask questions.