I often say that as human beings, we end up being smart about stuff we never wanted to be smart about. For example, when I was first diagnosed with interstitial cystitis (IC), I knew very little about the disease and spent a lot of time reading to understand what was happening to me. The one thing I wasn’t worried about was the diet given to me by my urologist. After all, I was a dietitian, right? I was good at helping other people manage their special diets and was confident I could do it for myself. I got right to work, cut out caffeine, and eliminated some of the more irritating foods like tomatoes and citrus fruits. I drank more water and avoided heavily spiced foods.
Shortly after my diagnosis, however, I was at a gathering where the only things on the menu were pizza, soft drinks, and beer. That was when it really hit me. This is going to be my life from now on-navigating food and drink all day, every day. Instantly, I felt beaten down and betrayed by my own body. It was a depressing realization that this wasn’t going to be as easy as I thought.
It actually took me some time to understand how diet affected my bladder symptoms. Since it was 1998, at first, I had to rely on information given to me by my urologist. After a few months I insisted that our family invest in a new computer and get “online” so that I could research more via the Internet. What a relief to find that I was not alone in my situation! I found an online support group on the web, the IC network that literally saved my sanity and provided me with hope that my urologist was not able to give. I posted regularly, asking question after question; eventually reaching the point where I was answering other patients’ questions. Over time, the few people who knew I was a dietitian began begging me to write a book about IC and diet. I resisted for a very long time because, in my mind, I was the farthest thing from being an “expert”. I was still trying to figure everything out myself!
As I recall those early days, I can see now that what I was doing was preparing me for the work I do now. In order to understand the disease, I quickly became proficient in online research and formed relationships with people who held key positions in the IC community. While writing posts for the online support group, I fine tuned my writing skills. Eventually, I started talking to patients on the phone, guiding them through their first attempts at determining their personal trigger foods. In fact, the more opportunities that I was given to help other people, the better I felt about my own situation.
Slowly, I realized that I actually was in a unique position to help other IC patients with their diet. Although most dietitians counsel patients about diseases that they don’t have personal experience with, it helps to note that many IC patients have had negative experiences with the medical system, often encountering multiple providers who have no clue about the disease. As a result, they are often skeptical and distrust any advice they are give. When patients seek my help, however, they recognize that my expertise comes not only from research, but from personal experience. I am “one” of them-if I can do it, they can do it. I am an expert and a testimonial in one package! In fact, just the realization that I have been through what they are experiencing can be motivating enough that my patients begin to see the IC diet and other lifestyle changes as challenges rather than burdens.
Having IC not only gave me credence with my patients, but it also created opportunities as an entrepreneur that I may never have had. To date, I have spoken to support groups, dietitians, and regional forums all across the country. I took the risk and eventually wrote three books about IC that are now recommended by all of the major IC organizations, one for dietitians and other nutrition educators.I have even appeared in a PBS special about IC! Never could I have imagined that these things were possible for me. I have slowly learned to turn a curse into a blessing and to use the knowledge I never wanted to help others in ways I could only have imagined before.
Julie Beyer, MA, RD, is a Michigan dietitian and author of several books including Interstitial Cystitis: A Guide for Nutrition Educators. She provides resources for patients and medical educators and also coaches IC patients on diet and lifestyle modification. Julie is a speaker and consultant at IC Support Groups and conferences across the country.