If I Had Known Then What I Know Now, I Would Have Never Trusted This Provider With My Care

 

 

How being dismissed by a cardiologist delayed my POTS diagnosis and taught me the cost of not being believed.

I came to this cardiologist seeking ongoing care for clear POTS (Postural Orthostatic Tachycardia Syndrome) symptoms. From the very beginning, I explicitly stated that my family and I suspected POTS. From the very beginning, I was dismissed.

After testing, I was told by the echocardiogram technician, the nurse practitioner, and Dr. Michael E. Merhige, MD, all in the same room on the same day, that my results were “normal.”

During testing, I expressed dizziness and lightheadedness and said I wanted to stop. Instead of stopping, I was repeatedly asked why. When my breathing became labored, the echo tech told me to “breathe slower,” as if I had conscious control over what was happening to my body. My heart rate reached 147 while speed walking. They also failed to document my heart rate upon standing, data that would have shown it was already elevated.

As my symptoms worsened, the echo tech and nurse practitioner physically held onto me while I said I felt like I was going to faint. I was asked if I could “keep going.” I made it to nearly seven minutes. I was seeing black spots. When they finally sat me down, I was told I was experiencing vertigo or inner ear issues.

Later, when I described that my hands turn dark red, almost purple, when at my sides, with swelling, mottling, and itching, I was told to walk like a “T-rex” instead. A tilt table test referral was outright refused. They claimed I wanted it. I needed it. I cannot function normally, and I have a five-year-old child.

I was told my exercise intolerance test was “normal for someone who works out.” This matters because a new cardiologist, reviewing the same data, listening to my symptoms, and actually taking my lived experience seriously, confirmed that my presentation is consistent with POTS.

The difference was not the data.
The difference was that the new doctor listened.

They also noted that my heart rate was not properly recorded during treadmill intervals, another critical omission.

Because of this dismissal, my diagnosis was delayed. My symptoms worsened. But worse than the physical decline was the psychological harm. I began doubting my own body. I questioned my reality. I felt shame; deep, corrosive shame, from being repeatedly told, implicitly and explicitly, that nothing was wrong when everything inside me was screaming otherwise.

That kind of harm doesn’t show up on a chart.
But it is very real.

When I decided to switch cardiologists, things became even more concerning. I was given the runaround trying to obtain my own medical records, told I needed authorization, then told I had to pay $0.75 per page. I would have paid without hesitation if it hadn’t been paired with resistance and attitude once it became clear I was leaving the practice.

I explained that I could access records through portals with every other provider I’ve seen. I was then told to use the portal, which they do not have.

I also explicitly stated that I needed my records for a government claim, in which case patients cannot legally be charged. Even if payment had been an issue, withholding records would not have been permissible.

My new cardiologist not only diagnosed me with POTS but also raised concerns that unnecessary testing appeared to have been pushed despite being told nothing was wrong, further eroding my trust in my prior care.

I am also deeply concerned about a broader pattern. As a Black/African American patient, I noticed that I am not the only Black patient who has had a one-star experience with this provider. That matters. Dismissal—especially of chronically ill and marginalized patients—is not random. It is systemic.

If you are chronically ill, disabled, or suspect POTS because of your heart rate, please be cautious. If you are a patient of color, be especially vigilant. And if you are told “everything is normal” while your body is clearly not—trust but verify. Believe in yourself. Seek another opinion sooner than I did.

This is not written out of anger alone.
It is written so that other patients are warned, empowered, and reminded of a fundamental truth:

You deserve to be listened to.

Disclaimer: This piece describes my personal medical experience and opinions based on documented encounters and subsequent care. It is written to raise awareness and encourage patient advocacy, not to provide medical or legal advice. Experiences may vary.

 

If this resonated with you, please know you’re not alone—and you’re not imagining your symptoms. I’m writing openly about chronic illness, POTS, medical dismissal, and learning how to advocate for myself in a system that often doesn’t listen.

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