Humans of BRAVE! Featuring Emma Whitmore - Advocating in Healthcare: My Healthcare Journey

Advocating in Healthcare: My Healthcare Journey

Hello! My name is Emma Whitmore and welcome to my story. I was an intern for BRAVE for a year and a half working as a elementary school mentor and a mentoring team leader. I will be writing a mini series of three different posts all relating to self advocacy, my journey getting there, and tips on how you can get there yourself. All of my posts will relate to my healthcare experience and how it has shaped me into a stronger, more confident advocate for myself. I hope you enjoy!

I’ve found writing about this topic to be more difficult than I expected. Every time I open up my computer to write, I find myself creating distractions and moving on to something else. Thinking about why I’ve had trouble digging in, I’ve realized it’s because it scares me. It’s because it’s vulnerable. It’s personal. It’s because thinking about what I’ve gone through makes me sad, and I’ve always struggled with feeling sadness. But I’m realizing that’s human. And that’s the truth. And that’s okay. So, here is a totally true, open, and vulnerable story of my healthcare journey.

A few months ago I was diagnosed with psoriatic arthritis. Getting here has been a two-year- long journey that has had a significant impact on my life. This isn’t even the end of my journey, as now I am struggling to receive medication for my diagnosis. But still, it’s a step, and a big one! And it’s a  pretty strange feeling to be a 22-year-old young woman with arthritis in all joints of my body. I have old lady bones. If you don’t know what psoriatic arthritis is, it’s a form of arthritis that can only be formed if you have the autoimmune disease called psoriasis. Psoriasis is when your skin cells attack themselves in areas where they need to heal. So basically, this has moved to my joints as well.

But I’m getting ahead of myself here. My diagnosis is the end of my journey so far. How did I get here? It all began over the summer in 2017. Slowly my life began to change. I, an extremely active young woman who loved hiking, riding my bike, yoga, and being outside, could barely get through my day. I started to really notice it when I went back for my senior year of college, and I would wake up, go to class, and barely be able to get through two hours of lecture. Walking back to my apartment felt like trudging through mud rather than walking on pavement. This exhaustion first affected me every couple days, then every other day, on to every single day of my life. Every class I went to and every meeting drained me to my core. This was not a tired I had ever felt before. This tired sucked me of my life and my powerful, beautiful soul I had always loved. This tired was becoming the biggest part of me. People around me were still celebrating my positivity, smile, and light, but I no longer felt it myself. I could pull myself together enough to get through a class or a meeting, but then I would go home and be empty of everything, giving all my time to sleep. I thought about taking a break from school for a while, in my last final year of school, because of how deep I was drowning in my exhaustion.

So, I decided to see my doctor. This one doctor visit turned to two, to three, to multiple times a month driving from Connecticut to Massachusetts with a staggering amount of health issues adding up. I would list them, but by number 30 you’d be bored. As tests came back negative my doctor started to blame all of my symptoms on mental health issues. This is not to say mental health is not important. It is so important. The anxiety and depression my symptoms caused were what the medical community seemed to feel was the root of the issue. Especially as time went on and no progress was made in discovering a medical diagnosis.

Having people misunderstand me on and on created a learned helplessness in me to accept my exhaustion. However, mental health issues were not all to blame for what I was feeling. I knew something was wrong. This is my body. MY body! And people were telling me there was nothing wrong. I did not know how to stand up for myself or say something. I didn’t realize I needed to advocate for myself in places like the doctor's office, where I was taught that I was talking to an expert, until I was there and in it and my health and life depended on it. Doctors were telling me I couldn’t understand how I was feeling because of my age and because I am a woman. Being a woman meant that it was all in my head. And the copious amounts of times this was brought up to me I slowly started to believe it too. Women are more likely to have their medical symptoms blamed solely to mental health, and I started to understand and learn this too well.

But as I went through my journey, I grew stronger.  I have learned ways to stand up for myself while navigating the American healthcare system as a young adult woman. Here are six tips I have learned so far through my healthcare experience that can help you on your own self advocacy journey:

1.Write Everything Down

Write down literally everything. Every single thing you are feeling needs to be written on a piece of paper, on your phone, on your hand, etched into a piece of wood. It doesn’t matter, just write it down. By being able to write it down you are making sure that every single symptom is being mentioned and brought to attention. And if you’re like me, your memory is slowly declining and you can’t even remember in the moment everything that is going on. I find that having it written down allows me to help control the conversation and to make sure everything that I need to talk about is covered. Plus, if you are afraid to bring up everything you are worried about, you can simply hand your list to your doctor so they know all of your concerns.

2.Think in a New Mindset

It’s good to remember when you go to the doctor, you are paying them for their time. You are their client. You are paying your copay, or whatever you need to be able to see them, and you deserve all of your questions to be answered and to be given the attention they need. They work for you!

3.Do Your Research

Yes, your doctor went to medical school for a gazillion years, but you are the expert of your own body. If your doctor is not able to pinpoint what is wrong with you, do your own research and bring up your own possible diagnoses. This will allow them to test for things that they possibly didn’t think of.

3.Bring Someone With You

I know I’ve had a lot of trouble speaking up for myself in my life, and so starting out it has been really helpful to have someone with me in the doctor’s office to advocate for me. I’ll bring my mom or my friend to be there, so if I feel like I can’t speak up, I know they are going to do it for me. I’d say this is a great stepping stone before getting there yourself. I still have my mom help me out sometimes, because it can be discouraging feeling like every time I try to speak up I get shut down. She is always there for me when I need to give the doctors an extra push to give me attention, and if you have someone you can think of that would be able to do that for you, use them!

4.Understand the Way Doctors Think

It’s helpful to understand the way that doctors are thinking when looking at your symptoms. A lot of doctors look at what is going on in a very logical way, but not necessarily in a holistic view. They also think about what is typically true. I ran into a lot of issues where doctors were dismissing my symptoms to certain diseases because I was simply too young to experience that diagnosis. However, plenty of people can get any disease at any age and it is extremely frustrating to be dismissed when you know your symptoms could be serious.

A good book to read that I recommend to understand how doctors think is called “How Doctors Think” by Jerome Groopman.

5.Know When to Change Doctors

If your doctor isn’t meeting your needs, don’t be afraid to find a new one. There are plenty of doctors out there that could be more understanding and more willing to help. On my journey I stayed with the same doctor for over a year dealing with my issues, and she just kept redirecting me. I started to believe her even though I knew what she was saying was wrong, and something was wrong with my body. Eventually I was able to find a doctor who understood where I was coming from and didn’t dismiss my symptoms. I wanted to cry when she told me that many women my age have their symptoms brushed off to mental health issues, and that she was dedicated to try to help me figure this out. When speaking to her I felt like she knew the severity of my issues and that I needed help now.

Unfortunately this system is trial and error. It’s always good to read reviews online before choosing who to see and if it’s possible to get references from people you know.

6.And finally, don’t give up.

Becoming your own healthcare advocate takes practice. You owe it to yourself to be your strongest advocate. You deserve to be heard.