Editor’s Note: Patient Worthy is proud to bring you this story-share, originally written by Gwen Pike, founder of the podcast Empowerment in Illness.
When I was in my twenties, life was everything. I was singing in the choir, attending Bible study, working a job I loved with all the overtime I wanted, and enjoying time with friends and my long-term partner. Life felt full, vibrant, and unstoppable.
But one day, I started feeling unusually tired. I assumed I was just doing too much, so I cut back, less
overtime, fewer hangouts, even stopped singing in the choir. But it didn’t help. That tiredness turned
into full-blown fatigue. Then came the rashes, low-grade fevers, weight loss, and painful canker sores in my mouth and nose. I was in the emergency room so often it started to feel routine.
At one point during an ER visit, a doctor told me I needed to find a primary care physician. But I didn’t
have one. I’d never been sick before, not like this.
When I finally found a doctor, things got worse. He asked me to come to his office every single day. I
entered through a side door, separate from other patients, and sat in a storage room with a hospital bed.
He pumped IV fluids into me for weeks, but I never had to use the restroom. Eventually, when I did try, all that came out was blood. My temperature stayed at 101 to 102 degrees. I was given medication for each symptom, tested for everything under the sun, but nothing came back conclusive. Still, he didn’t refer me to a specialist or admit me to the hospital.
I couldn’t eat. The sores in my mouth made it impossible. One day, my boyfriend saw how bad I had
gotten. He picked me up and took me to my sister’s house. He told her I could no longer care for myself. My sister took action and researched my symptoms. She booked an appointment with a rheumatologist. The moment the doctor saw me, he held my hand and said, “We’re going to take good care of you.” They put me in a wheelchair and took me straight to the hospital. That night, my family was told to prepare for the worst. My kidneys were failing, my liver was in trouble, and I had Bell’s palsy. I had never been hospitalized before, but now I was facing multiple organ failure. I still didn’t have a diagnosis.
After nearly a month in the hospital, I finally received an answer: Systemic Lupus Erythematosus. I was started on Prednisone and Plaquenil. The doctor handed me a pamphlet and told me to live like I was eighty years old.
I tried joining a support group, hoping to feel less alone. But the meeting was filled with fear and
hopelessness. One woman said her lupus was affecting her brain, and it shook me so badly that I never
went back. I didn’t want anyone else to feel like that scared and alone without hope. That moment stuck with me.
That’s why I created the Empowerment in Illness podcast. Every week, I release a new episode where
people with chronic illnesses and autoimmune conditions can feel seen, heard, and supported. We talk
about real topics and welcome not just warriors, but also their allies. It’s a space filled with hope and
understanding.
I also started Empowerment in Illness, LLC, a wellness advocacy company supporting people with
chronic conditions as they navigate work, life, and self-advocacy. We speak up on workplace rights,
create resources, and build a thriving community. Our online store offers products designed by and for
people with chronic illnesses. And we’re creating a scholarship fund to support students managing
school while living with these health challenges.
What began as a terrifying diagnosis became a fire that drives me forward. I don’t want to just survive. I want to help others live fully, advocate fiercely, and believe that no diagnosis can silence their voice.
If you would like to join our community, follow me on TikTok, Facebook, Instagram, and X.
