Take Heart: Tips for Advocating for Yourself, Your Health and Your Heart

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I was going to be the next Whitney Houston. That’s what I thought when I started vocal lessons at Butler when I was fifteen. That voice lesson ended when I slid down the wall, slumping to the floor. It was the first time I ever passed out. It was not the last time. 

According to the CDC, approximately 655,000 people die every year from cardiovascular disease. That is one in every four adult deaths. Approximately half of those deaths are women per the American Heart Association. That is one in every three female deaths. We can never know the role gender played in the care of these women. What we do know is gender plays a role in the care that women receive. And I know that every day that I am not one of those women is a good day.

In 2018 I was diagnosed with a right anomalous coronary artery intramural, intraarterial or malignant course. It is every bit as scary as it sounds. The coronary arteries get blood to the left and right sides of the heart respectively. My right coronary artery is not where it is supposed to be. It has to travel further to get blood to the right side of my heart and part of that path is between the aorta and pulmonary artery. That means when my heart pumps hard it can squeeze the artery and stop my heart.

The defect in my heart was not found the day I passed out and my hope of international stardom was dashed. My heart defect was found thirty years later. Thirty years of going to doctors and specialists. Thirty years of passing out and missing out. And thirty years of advocating for myself to be seen, heard, and valued by male doctors who often dismissed me despite the seriousness of my symptoms. Now if 2020 taught us nothing else, it taught us doctors are essential. Excellent doctors were essential in my care. But there are ethnic, racial, and gender gaps in healthcare. So advocacy and education are essential in closing those gaps. So I want to share some of what I learned those thirty years but first I want to tell you…

You deserve quality healthcare.

You deserve to be seen and to be heard. You are valuable.

You deserve to partner with your health care provider to make decisions about your body and your care. 

Your PMP may be an expert on the body but you are the expert on your body.

Here are some practical tips on how you can advocate for yourself when it comes to your healthcare:

Keep a journal

Write down any concerns you may have; include any abnormalities or symptoms even if you think they are not important or relevant. Particularly when it comes to heart health, symptoms of heart disease may be different in women than men or than traditionally thought. For example, fatigue is a symptom of a heart attack. But how many of us push past feeling fatigued? So from fatigue to frequent headaches to changes in weight, sleep jot it all down and share it with your health care provider. Doctors are not there to judge you. The more detailed information you can provide, the more accurate diagnosis they can make.

Don’t be afraid to ask questions and write down the answer. I cannot tell you how many times I went into an appointment with my questions and left with the same unanswered questions.  When you have concerns about your health, it can be difficult to take it all in and understand all the information. When my cardiologist first explained my condition and his recommendations to my family and me, he took well over an hour. He even drew a picture of my heart so we could visualize the defect. So now to make sure my questions get answers I repeat what I heard until I am comfortable that the doctor answered the question I asked. Sometimes I ask for pictures too!

Partner with your provider

Doctors do know a lot of things; they do not know everything. My cardiologist has seen thousands of hearts in his 30+ years as a cardiologist. He had never seen a heart like mine. So don’t assume your doctor knows. Your doctor is a medical expert but you are the expert on you. Partner with your health care provider by engaging in a discussion about your care. One of the most impactful encounters I had with a doctor was an ER physician. He also happened to be an osteopathic doctor I saw towards the end of my thirty-year quest for medical answers. On this occasion, I thought I was having a heart attack.  Remember how I said my artery can be squeezed? Well, it feels like a heart attack. Rather than dismiss my concerns, pass me on to an outpatient provider or tell me I was being admitted, he sat down next to me and said, “Ok let’s discuss your options and decide together what the best course is for you.”  We were able to have that discussion because I was informed. As a partner, you have to do your part. So do your research (please not on WebMD!) Use medical journals or associations like the American Heart Association to get reliable information. 

Find a provider you feel comfortable with

If your doctor isn’t unwilling to answer questions, clarify, or partner with you, that provider may not be a good fit for you. As positive as that experience I just referenced with the ER doctor was, the doctor the next morning walked into my room and in the most dismissive tone possible said I was probably stressed out and sent me home. That was one of the worst experiences I have had. I share that to say, it is okay to ask for another provider. 

I’m sharing my heart story because February is American Heart Month. Specifically, Go Red for Women is a health initiative by the American Heart Association to educate the public about women’s heart health. Sadly research shows women do not receive the same standard of care as men. This is particularly true when it comes to heart health. Women who have a heart attack are more likely to be sent home from the hospital than their male counterparts. This is unacceptable. I realize that most tips on women’s heart health are things like exercise, eat right and get proper sleep. I did those things. But if I had only done those things, if I had not advocated for myself then I wouldn’t be here.

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