My Doctors Refused to Test Me for Lupus

As told to Nicole Audrey Spector

I grew up in a home plagued by chronic illness. My mother had lupus, and I was her caregiver, starting at the age of 10. My grandmother had severe rheumatoid arthritis (I now believe it was tied to lupus that was never diagnosed). I provided care to her, too, since my mom was often too sick to get around, and Medicare only provided so much help — until they provided basically nothing.

I did all the cooking and meal prep. I knew what to feed my mother, who lived with kidney damage, versus what to feed my grandmother, who lived with heart damage. I organized and doled out their medications. I learned to always keep the door unlocked. That way if a medic had to come in, they wouldn’t cause damage to the house by breaking a window or busting down the door.

I grew up fast. I had to, as everyone’s go-to person. I started driving at 14, sitting on books to make me taller. At 16, I had my first child — one of three.

Being forced to become a grown-up while still a kid was really tough, but it helped shape me into a strong, self-aware advocate not only for the health of my loved ones, but also for the health of myself.

Lupus can run in families, so I wanted to be proactive in case I had it. Starting in my 20s, I requested a full rheumatic blood panel at every physical exam — just as a precaution. My doctors declined my repeated requests. One even told me, “You’re fine. Don’t manifest something.”

Being dismissed by doctors became a disturbing trend. When I came down with shingles, I was told it was allergies and given allergy medication that helped for a couple weeks — until my lymph nodes swelled up. Then I had back spasms and was given X-rays that provided no clues as to what was happening in me. My fingers became blotchy. They bent and crossed. I felt like I had the flu all the time.

My health issues persisted for five years. It was like a game of Whack-a-Mole. One thing would pop up, followed by another and another.

Finally, when I was 30 — after five years of battling mystery symptoms — an orthopedic doctor connected the dots. “You sound like my sister,” he said. “She has lupus.” This doctor took me seriously. It was such a relief to have someone validate me and not make me feel like I was crazy for suspecting I had lupus.

It so happened that I had just — at long last — been tested for lupus by my primary care provider (PCP), but I had not gotten the results yet. The orthopedist called the PCP who told him that the results had come in and, in fact, I did have lupus. Then and there, I was referred to a rheumatologist.

After the doctor’s visit and the reveal that I had lupus, I sat in my car crying. I cried mostly out of relief. Finally, I had answers. And I felt empowered. “Try me,” I said in my mind, talking to this horrible disease inside me. “I’m going to beat this.”

I worked hard with my rheumatologist and underwent a few different types of treatments to help manage the symptoms of lupus — a chronic disease that has no cure. These treatments, including pills and infusions, would, at best, help one symptom, but often create another.

2024

Throughout many years and many attempts at getting better, I remained optimistic, always — but my health worsened. Eventually, I was diagnosed with endometriosis, a disease that can be associated with lupus. I also had a stroke (lupus can make you high-risk for strokes). I was diagnosed with chronic kidney disease. I underwent stem cell therapy for kidney failure, and eventually had a kidney transplant.

Today, I am in lupus remission, which is great, of course, but I have — no exaggeration — 15 other illnesses that are active. My body has been severely beaten down by all these serious conditions. My lung capacity is at 42%.

Throughout this challenging journey of trying to get well, I learned so much about lupus that I went into health advocacy work. I am on 10 different boards and work passionately with people living with lupus, aiming to help get them educated about the disease, their rights and what is available to them. I also aim to provide inspiration by sharing my own story and perseverance.

I’m happy with my life and I maintain the attitude of “Not why me. Try me.” I will never go down as a victim of lupus in this battle. I will always show up and fight back. And though there are things that I can’t do because of my health, there’s so much that I can do in spite of it. I can travel. And I travel my heart out, visiting all the places my grandmother and mother, both gone now, never got to see.

I wish none of us had to go through the many nightmares that lupus creates. But I also strongly believe that I wouldn’t be who I am today without my lupus journey. I want others living with lupus to not hide from this disease, terrible as it is, but instead to see it as an opportunity to become the person they were meant to be.

“You were a caterpillar before,” I say. “Now you will become a butterfly. But it’s up to you to become one. So, how will you do that?”

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