Meet Kayla Erb— writer, knitter, and disability advocate. Kayla was diagnosed with Crohn’s Disease and has shared how her diagnosis has impacted her life. For more of Kayla’s work, follow her on Instagram or check out her website here.
My chronic illness journey began when I was fourteen years old. I'll spare you the complete graphics of my explosions, and I will leave you with this image: My mom woke up wondering why I was taking a shower in the middle of the night, only to find my excessive vomit splashing the bathroom floor. That first hospital visit set the tone for the next eight years of my life.
I left learning I had a ruptured ovarian cyst, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, and Dysmenorrhea. I was not misdiagnosed. I was underdiagnosed. I did have all these things, but I would later learn they are all complications of a broader issue: Crohn's Disease.
Crohn's Disease is a chronic, incurable, inflammatory, autoimmune disease of the bowel. For me, this can include diarrhea, bleeding, bloating, nausea, vomiting, abdominal and pelvic pain, joint pain, muscle fatigue, vision changes, skin changes, oral and nasal ulcers, insomnia, and the cherries on top: anxiety and depression.
As my symptoms progressed, I was dismissed repeatedly. My doctor at the time said, "I don't know what to tell you. You're a healthy girl. Eat a salad. Come back when you're 40." Fiber is my biggest trigger food, and I got worse. This was when I learned I would have to advocate for myself.
By the time I was 22, I had found a team of specialists who took the time to hear the long history and list of symptoms I had to report. With the simple gesture of giving me the time of day, I was diagnosed, adequately treated, and nearly symptom-free within one year. After sharing my story, I learned how many people shared the same experience of neglect and medical trauma that I did. I wanted to help. I knew how to advocate for myself, but I needed the tools to advocate for others.
This Spring, I will graduate with my MA in Disability Studies from CUNY School of Professional Studies. Through the program, I quickly learned how misunderstood disability is in our society, so much so that I did not even know I was disabled.
Today, I am a proud owner of two small businesses. Through consulting by KERB, I advocate and write grant proposals for nonprofits and small businesses. Through Handmade by KERB, I maintain my mental health through knitting and quilting. I am lucky enough to have been able to create a life and career that accommodates my body's needs while learning about new things every day.
There are so many exciting things happening- my new career, writing my first book, collaborating with Intimately, and expecting my first child. Every morning, I rub my bloated belly and express gratitude to this body. It didn't always do what it was supposed to, but after years of getting to know each other and finding suitable sources to accommodate our needs, we are finally working together.
I cannot wait to show the world what Intimately and KERB have in mind, and I couldn't be prouder to work among talented, kind-hearted, creative individuals working toward a goal of inclusivity.
Let's connect on Instagram! There you can find everything from knit blankets to Cimzia injections and soon, baby stuff! I can't wait to meet you.
Check out some of Kayla’s work!