scorecardIt took me 19 years and 12 doctors to finally get diagnosed with lupus. No one seemed to care enough about my pain.
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It took me 19 years and 12 doctors to finally get diagnosed with lupus. No one seemed to care enough about my pain.

Lauren Crosby Medlicott   

It took me 19 years and 12 doctors to finally get diagnosed with lupus. No one seemed to care enough about my pain.
LifeScience3 min read
Courtesy of Nyobie Gordon-Ricks
  • Nyobie Gordon-Ricks started experiencing painful symptoms at 12.
  • Over the course of 19 years, she saw 12 doctors for help.

This as-told-to essay is based on a conversation with Nyobie Gordon-Ricks. It has been edited for length and clarity.

At 12, I remember I started having irregular periods and experiencing pain throughout my body. I wasn't too concerned, and neither was my mom, until I turned 14. The pain revved up, especially in my back and legs. I also started to have swelling in my hands and feet.

My mom took me to the doctor, and when they did blood tests, they saw that I was anemic and had a vitamin D deficiency.

I tried to diet and exercise to manage my symptoms, but I didn't seem to be getting better. I was tired all the time and often in pain. Even though I told my mom this, she seemed to listen to the doctor, not her daughter.

I experienced paralysis twice

When I was 14, I experienced my first of two episodes of partial paralysis. Suddenly, I couldn't feel anything from the waist down. It was totally numb for hours. Even though my mom had seen me in bed for hours, unable to move, she didn't fight for me and continued to attribute the symptoms to deficiencies.

I felt dismissed, alone. I knew something was wrong, but I had to learn to live with my symptoms because no one listened.

After my second paralysis episode, I asked my mom to take me to the hospital. They started asking me psychological questions, clearly thinking I was making my symptoms up to avoid school or chores at home. The doctor poked my numb foot until it bled, which proved to them I couldn't feel anything.

Again, doctors did nothing. I just stopped telling my mom about the pain, learning to manage my painful flare-ups by resting and taking pain killers.

A woman of color was the one to diagnose me

Then at 23, I developed a painful rash. When I saw a doctor, he immediately said it was ringworm. I had a second opinion from a dermatologist who said the same. I knew it wasn't ringworm, even though I didn't know what it was. But no one would listen to me.

After the birth of my first child in 2002, all my painful symptoms miraculously subsided for seven years. I wasn't sure why. I thought maybe it had to do with hormones. But all the symptoms returned with a vengeance in 2009.

I saw another doctor who couldn't identify the problem and then another dermatologist, who once again said it was ringworm.

I was becoming increasingly angry at how I was being disregarded and ignored. I felt like I wasn't being taken seriously because I'm a Black woman. But I didn't know how to fight for myself.

At about 30, I saw a gynecologist for a routine yearly checkup. She was a woman of color. When she took my blood, she found out my platelet count was very low, in the single-digit thousands, and warned if I cut myself, I could bleed out.

The gynecologist referred me to a hematologist, who thought I might have leukemia. They wanted to take a bone-marrow sample. I didn't think that was necessary and didn't feel listened to, so I looked for another doctor.

Approaching yet another doctor, a woman of color, I was finally given a thorough assessment and asked about my family history and all the symptoms I had been experiencing for years. They ran blood tests and found that I tested positive for lupus. After I saw a rheumatologist, the diagnosis was confirmed when I was 32 — I had advanced lupus.

I knew something was wrong with me

I felt vindicated because I had known all along that something was wrong.

Over the course of this journey, I'd probably seen about 12 doctors. The only two who really listened to me were women of color. It took 19 years for me to get a diagnosis. By the time I was diagnosed, the lupus was found to have been affecting my brain and kidneys. If that gynecologist hadn't taken those blood tests, I might not be here today.

I had experienced so much pain over those 19 years, and I continue to experience flare-ups of pain today. There were days I wasn't able to brush my teeth or comb my hair. I remember once not even being able to make my own child breakfast. My relationships have suffered, too.

Yet no one seemed to care enough to find out why my pain was so acute and debilitating.