Riding the Behcet’s Roller Coaster
My name is Joanne. When you’re 23, fresh out of college and just starting your first real job, you think that you have your whole wonderful life ahead of you. You have your friends, your boyfriend, a job that you like, your first car, and a cheap apartment with a nice roommate. Life is good, and you think that nothing’s going to stand in your way.
Well, things didn’t quite work out like that for me. I had the job and the friends and the car and the roommate, and life was good – at least until the day that one of my eyes started to hurt. Over the course of a few hours, the pain got worse, and looking at any bright light felt like someone was shoving a hot poker in my eye. When I looked in the mirror, I saw that there was a bright red ring surrounding the iris, which is the colored part of my eye. Luckily, there was an emergency room nearby that specialized in visual problems (what are the odds?). The doctor that I saw provided steroid drops for me to use for the next couple of weeks. A follow-up appointment confirmed that the inflammation was gone and that my eye was back to normal. There was no explanation for what had happened, but I didn’t care as long as I could see again without pain.
A few weeks later, though, the red ring was back, and this time the pain was worse. I returned to the emergency room, and that was the beginning of a 17-year odyssey to find out what was wrong.
I would have been OK if the only thing wrong was with one of my eyes. After all, with the indestructibility of youth, I knew that I always had a second eye as backup. But I only had one mouth to use for eating, and that mouth was starting to get painful on a regular basis, too. It’s hard to eat and drink when your mouth has ulcerations in it. The sores could be anywhere – on the top or bottom of my tongue, or on the roof or sides of my mouth. There could be up to 100 sores at one time. How can you talk with your friends when every part of your mouth hurts? How do you eat? (You don’t.) How can you kiss your boyfriend or be intimate when he thinks you must have picked up herpes from being with someone else? – even if your herpes test is negative.
My joints started to hurt all the time, especially my knees, ankles and hands. There were strange red rashes on my skin, and painful bumps and lumps that came and went on their own, even in the genital area. Blood test results were abnormal, and finally the vision in my other eye was affected. Now I had foggy vision on one side, and distorted vision on the other. I panicked. By then I was in my late 20s, but I felt like an old lady. I couldn’t see normally, walk normally, talk normally or live normally. Any plans that I tried to make were constantly disrupted with trips to the doctor, or to the hospital, or the emergency room. How many people at that age have regular appointments with ophthalmologists, rheumatologists, dermatologists, gynecologists, retinal specialists, neurologists, and cardiologists? It was just ridiculous. But the medical problems I was experiencing were, for the most part, internal — I felt terrible on the inside but looked fine on the outside. As a result, I was often seen as an attention-seeker, a hypochondriac. It reached the point that even my parents didn’t believe me. My primary care doctor finally told me to make an appointment with a psychologist for an evaluation, because she felt that I was spending too much time on the internet and in libraries trying to find answers for what she felt were my supposed health problems.
Seeing the psychologist was a turning point. I was told that I had real health issues that weren’t being addressed, and that I was acting appropriately by searching for information to help myself. Fortified with support from our meeting, I decided to continue my quest for answers. I read everything that I could get my hands on. There seemed to be three possible options for my health problems — lupus, multiple sclerosis, or Behcet’s disease (which had actually been suggested by one doctor years earlier, but immediately dismissed as too rare). I finally joined an online support group for Behcet’s patients, as my symptoms fit most closely to this disease, and then I joined the American Behcet’s Disease Association.
I attended my first ABDA medical conference in 1996, 17 years after my first visit to the emergency room. This conference was a life-altering event: there I was in a room in Phoenix, surrounded by 30 other people from across the U.S. whose experiences matched my own. No one thought that I was imagining my symptoms, or just looking for attention. I left the 2-day meeting energized to try to help other patients who were hitting brick walls in their own search for answers. 1996 was a life-altering year in another respect – I finally met with a Boston ophthalmologist, an expert in diagnosing and treating cases of Behcet’s disease. He provided final confirmation that the painful patchwork of symptoms I’d been experiencing was most likely the result of Behcet’s disease; it had been poorly treated by doctors who had never taken the time to communicate with each other about my extensive health problems. After all the years of frustration, I had a diagnosis, and I now had a medical expert who could help resurrect my failing vision and overall health.
During the next year, I underwent cataract surgery and other repairs to my iris and retina, while also interviewing Behcet’s patients for a book I planned to write: “You Are Not Alone: 15 People with Behcet’s.” This book was followed six years later by the research-based “Essential Guide to Behcet’s Disease”, and an assortment of other patient-oriented support materials. I’ve worked closely with the ABDA to make sure that people know that these books are available to help them. The more I learn about Behcet’s disease, the more I want to share this information with others, so that no one else has to go through my 17 years of hell.
I am one of the privileged few. The symptoms that I’ve experienced for so long have slowed down and, in some cases, stopped entirely. After 28 years with Behcet’s, I’m not blind and I’m not disabled. I’m a self-employed wife and mother of two healthy teenagers, and I enjoy life on a daily basis. All people with Behcet’s should be so blessed.
This work has become my ministry, and I feel privileged to be able to offer up what I’ve learned. It’s hard to take that first step in educating others, though. Not only do you have to overcome the fear of “going public” with the intimate details of your illness, you also have to face any fears you may have of speaking in front of groups at all. I’ve had some practice dealing with these fears over the last couple of years, though. Producers from the Discovery Health Channel came across my behcetsdisease.com website in 2005, and based an episode of their “Mystery Diagnosis” series on my 17-year search for a diagnosis. And I’m proud to say that the American Medical Association recently presented me with their 2006 national “Citation for Distinguished Service” award, for my ongoing work in educating people about Behcet’s. My most recent project was to carry out a research study on “Behcet’s disease, pregnancy and postpartum.” The abstract for this study was accepted for presentation at the International Behcet’s Disease Conference in Portugal in 2006; the information that I gathered effectively doubled the amount of data that had been available to date in the world on pregnancy and Behcet’s.
Joining the Vasculitis Foundation in their educational endeavors was an easy choice for me to make, and a natural extension of the outreach that I’ve already been doing for the last 10 years.
My journey with Behcet’s disease has never been easy, but the emotional rewards that come from helping other patients has made the trip an overwhelming experience.
Published: February 2007
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