My husband and I are urban explorers. We go into abandoned buildings – the saggy, unloved ones – and shine light in the dark corners. Our cameras find beauty and order in the chaos. We share the results with others.
It’s profoundly satisfying.
Now let’s make a few substitutions, so that rare disease is the focus of my efforts instead. Research and writing becomes that shining light, and a computer – not a camera – helps to create and distribute the final results. Welcome to my world: What I do with photography on weekends is a natural extension of my health-related calling over the last 20 years.
So what do I do? I’m a medical information “concierge” for people with a rare disease, and for health care providers who may not have time to research the unusual. I dig up the evidence-based materials and the specialists that people need to move forward with treatment. I’m a medical/health writer who can translate impossible medicalese into plain English. I’m also a known advocate for people with Behcet’s disease. None of these jobs, though, is full time. Instead, I make my living as a pharmaceutical case manager. I cram these other tasks into my “free time.”
I never expected to be an advocate for anyone. Becoming a medical-information search specialist and a patient advocate was the direct result of being very sick, and being very sick wasn’t part of my life plan after college.
I was 23 when I started having serious health issues. As I looked for answers, many doctors thought I was looking for attention instead. “Find something else to do with your time,” they said. In their eyes, I was too focused on my health.
Uveitis. Oral ulcers. Genital sores. Skin lesions. Rashes. Pain.
I lined up specialists, but none of my specialists talked to each other. The U.S. healthcare system didn’t help: Whenever I switched jobs and acquired new health insurance, I was forced to leave the few doctors who were trying to make progress with my diagnosis. I had to start from scratch, again and again.
Headaches. Superficial thrombophlebitis. Cataracts. Tachycardia. Vitreous hemorrhage. Peripheral neuropathy. Pain.
Add new health problems every few months. Rinse and repeat.
One PCP finally suggested Behcet’s disease as a diagnosis, but immediately dismissed it. “You’re white,” she said, “and you’re not from the Middle East. It’s too rare.” I’d done my own research for years and already felt it was the most viable option, but this ‘zebra’ diagnosis was always out of reach. I was continually shuttled into categories that didn’t fit, but made my doctors feel more comfortable. They could send me for tests, believe that they’d helped me, and move on to other patients who had problems they could actually solve. I was an incredible time sink for people who had no time to waste.
I finally made an appointment in Boston with a worldwide uveitis specialist who had a background in immunology. I handed him my long list of symptoms, knowing well enough to keep my mouth shut and allow him to reach his own conclusions. Invariably, doctors never wanted to hear the name of the zebra bearing down on them.
“I know what’s wrong with you,” he said. “You have Behcet’s disease.”
The relief I felt was immediate and overwhelming – but at the same time, it was now me who had no time to waste. How many other people were jumping over the same diagnostic and treatment hurdles that I’d been facing for 17 years? What could I do to help?
I joined the American Behcet’s Disease Association and put my writing and medical-search skills to work. I’d always wanted to read about Behcet’s patients’ experiences, but a book like that didn’t exist. It was the start of my single-minded focus. I spent a year compiling and editing interviews I’d conducted with other BD patients. The interviews were eye-opening, especially when patients described interactions they’d had with physicians prior to diagnosis:
A doctor told me I was creating this illness because motherhood was ‘not a challenging enough’ job.
One neurologist wouldn’t see me without my husband. Upon hearing [that I had just moved], he told me that my whole problem was relocation adjustment. Without examining me, he gave my husband literature on free-floating anxiety and told him this was the problem.
I self-published my efforts in the book, You Are Not Alone: 15 People with Behcet’s. I was amazed by the response. It seemed that patients’ experiences touched a vital nerve in the Behcet’s community, opening a dialogue that was long overdue.
My first Behcet’s book was followed by two more; the most recent won a 2015 National Health Information Merit Award for Patient Education. I researched and wrote each of my books carefully, always mindful that I’m not medically trained. I made sure that Behcet’s experts reviewed my books prior to publication. While I wasn’t qualified to dispense medical advice to patients, I still had the ability to translate dense, evidence-based research studies into language everyone could understand.
Each positive email or social media post that I received from patients, physicians and support groups gave purpose to my work. And now? Behcet’s is no longer the bane of my existence; it’s become a lifelong commitment to service.
I went back to school in my late 50s to earn a Patient Advocacy certificate from UCLA. My goal was – and still is – to help as many Behcet’s patients as possible. No one else should have to suffer for 17 years, as I did, without a diagnosis and proper treatment.
But here’s the good news: The tide is turning for patient engagement in rare diseases. The best health care providers are willing to listen to their patients, to accept personal experiences as learning tools. Above all, they’re realizing that some patients have a depth of knowledge about their own disease that many physicians can only dream of.
Make the most of it. I did.
Joanne Zeis is a member of the American Behcet’s Disease Association, the International Society for Behcet’s Disease, NORD, the Alliance of Professional Health Advocates, and the American Medical Writers Association. She is a graduate of UCLA’s Patient Advocacy certificate program and holds a B.S. in Psychology from Tufts University.
In 2006, Joanne was the sole recipient of the American Medical Association’s Citation for Distinguished Service award, for her ongoing work on behalf of Behcet’s patients. The Citation is the highest national award given each year by the AMA to a non-medically-trained individual.
Joanne’s most recent book about Behcet’s disease was the recipient of a 2015 National Health Information Merit Award for Patient Education. Joanne has been living with Behcet’s since 1979 and advocating for patients’ needs since 1998.