It’s very hard for me to forget that somber year in 1963—the year when my lights went out. If you turned on a light, I would scream in agony. My parents had no idea what was happening. To put it simply, the lights drove me crazy. I would itch, itch, and itch like mad. This was the beginning of what would later be known to me as psoriasis.
Oh yes, everything has an origin—a beginning. This was mine.
Living in the Dark
The room I slept in as a child had to be completely dark. I insisted on the shades being pulled down. I didn’t want to see even the smallest sliver of light. My sisters thought I was crazy. I remember screaming at the top of my lungs: “Turn off the light!”
When I was taken to a doctor with this strange condition covering my body, the medical team was baffled. At the time, they simply told my parents to have me wear dark glasses. Really? On my first day of school, the school itself suggested I see a dermatologist. That’s when I was finally diagnosed with psoriasis.
I couldn’t even pronounce the word back then—and to this day, my 83-year-old father still can’t.
Looking back, I realize that what I was experiencing were early warning signs. Light wasn’t just annoying me; it was aggravating an autoimmune disease that I didn’t yet understand. Now I know that psoriasis isn’t only a skin disease—it’s an autoimmune condition, which makes sense of why ultraviolet light affected me so strongly.
Wrapped in Darkness
For months, my world remained dark. I would wrap myself in covers, creating a cocoon of blackness that eased the excessive burning and itching. My parents even covered the windows so no light could sneak in.
I felt bad for my sisters, who also had to live in the dark. Sometimes, they’d turn on the lights—not to be mean, but simply because they couldn’t understand what I was going through.
It’s been over 55 years since those days, but I still ask myself questions:
- Did you notice warning signs before your diagnosis?
- Did they make sense at the time?
- How much do early symptoms shape the way we live with illness later?
My Sister’s Perspective
I eventually asked my sister how she remembered those years. Her words still stay with me:
“I was afraid for you, not knowing what you had. You were always screaming. I was sad to see you go through the bleeding, itching, and dealing with the light. I couldn’t express my emotions as a younger sister, but it felt like punishment—like maybe we had done something bad and I was waiting to get it next. I later realized that we were just as much in the dark as you were.”
As an adult, my sisters now tell me how much they admire me—for my bravery, courage, strength, and determination.
Finding the Light
The origin of my psoriasis was traumatic. I was just a little girl with no comprehension of what was happening to my body. I often wonder how it affected my sisters emotionally.
But I no longer live in the dark. My lights are back on. I’ve stepped into the sunlight of my world, no longer afraid, no longer hiding.
The question remains: When did your psoriasis origin begin?