When Doctors Say You Look 'Too Young' To Be Chronically Ill
I woke up on a cold, February morning in 2013 and my heart felt like it was skipping beats. I stayed in bed waiting for it to stop, but it continued with every beat. So I got up and started getting ready for the day, all the while my palpitations continued. It had been one hour, then two and I started to get worried. At hour three I called my mom, who is a cardiac nurse, and asked her what I should do.
She gave me all the usual techniques to try, but nothing worked. Hour four my parents picked me up, because they didn’t feel it was safe for me to drive, and took me to the emergency room.
As you might expect, the second they put the leads on my chest to track my palpitations, they stopped.
I had no idea that morning would lead to a seven year fight to be believed and to receive a diagnosis. All because I was too young and didn’t look sick.
I have seen no less than 30 doctors from multiple different institutions including Indiana University and Mayo Clinic. Everywhere I went I was told I was “too young to be sick.” Too young for a heart problem, so I must not have a heart problem. Then they would tell me there was no need for me to return. All the while, still struggling everyday with a high heart rate, chest pain and palpitations.
Seven years later, even with a diagnosis of postural orthostatic tachycardia syndrome, or POTS, from Mayo Clinic, I still struggle with being believed. My illness is invisible to both doctors and laypeople. I don’t look sick, so I must not be sick.
But, I am sick. Regardless of my age or how I look, I am sick. I have the testing and diagnosis to prove it.
I had to quit my job because my pain was overwhelming. “But you don’t look sick,” they said. But I am.
Being a young female who doesn’t look sick has been a red mark on my file from day one. I’ve had doctors literally laugh in my face when I came to them for help. I’m just a dramatic, young female, “Go see a psychiatrist,” they said. “This is all in your head.”
“Stop wasting your time and money on medical bills.”
“You’re too young to be sick,” they said.
But I was sick nonetheless.
And I didn’t stop like they thought I should. I did my own research and I told the doctors what was wrong with me. However, doing so only strengthened their resolve that I was dramatic, and had decided something was wrong and stuck to it.
It wasn’t until I went through two years of traveling 16 hours, one way, every three months to endure the most horrific testing imaginable that they started to believe me.
Finally in December 2018, I was given the POTS diagnosis and found out my cardiologist knew I had POTS all along but kept it to himself because “it’s not a helpful diagnosis.”
At almost 30, people have stopped telling me I’m too young to be sick and have stuck with, “I don’t look sick.” But I am sick nonetheless.
We all have this picture in our minds of what sickness looks like and if something doesn’t fit that picture we assume health. We have to do better. As doctors, they need to do better and focus on the issue and not the person’s age, or how they look and use that to determine treatment. As friends and family members, it needs to be understood that we are tired. We are tired of fighting doctors who don’t believe us, please don’t add your name to the list of people we need to convince.
We may be young, we may not look sick, but we are sick nonetheless.
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