By spring 2015, I had been wading through the morass of potential practitioners for over a year, seldom finding anyone I stuck with for long. Calm, gentle, capable Dr. L was the only one who had lasted more than a few months.
My search had not been fruitless, though. In the process of meeting with so many doctors and healers, and reading so many books, I had learned what I needed in order to trust someone’s advice. And I needed a lot. My standards were high. Ulcerative colitis is a cantankerous, life-altering, budget-busting disease that requires specific expertise, attentiveness to the patient, and a broad, holistic view.
I had become adept at weeding out practitioners and so-called “experts” who didn’t measure up. My list of red flags had grown through experience. From now on, I would recognize those flags and act on them much earlier.
My list of medical red flags is still largely unchanged since 2015. They are:
- Claiming to know a cure (or “the” cure) for ulcerative colitis. Many diet books make this claim. David Klein’s book is just one. If there was a single cure that worked for most people, we would know it. We would KNOW it. Pretending to know how to cure most or all of your patients or readers is just plain arrogant, and ignorant.
- Outright dismissal of conventional, evidence-based medicine. Many naturopaths and holistic practitioners harbor this dangerous attitude, which to me is as great a sin as climate-change denial. It’s one thing to be skeptical and open to experimentation with alternative practices. But the scientific process has its place, and with a serious disease like ulcerative colitis, its impacts can be life saving.
- Outright dismissal of diet’s impacts on healing. Conventional doctors tend to harbor this dangerous attitude, which all colitis patients know is hogwash. Despite what many gastroenterologists say, there is scientific evidence that diet impacts flare-ups and may contribute to disease onset. So among gastroenterologists, I look for at least openness to diet experiments, if not full endorsement.
- Lack of a basic understanding of colitis. Many writers and practitioners conflate UC with Crohn’s, IBS, or other inflammatory conditions. Some even get basic medical terms mixed up! (Again, David Klein!) Colitis is a specific, complex disease with specific, complex needs. If someone can’t get their basic terms straight, they simply can’t be trusted to advise you.
- Ignorance of cost and paperwork burdens on the patient. This type of ignorance is annoying and even elitist. It also betrays a general lack of attention to detail–which is not desirable in treating a complex chronic disease.
It turned out that so far, none of my practitioners had all the answers. For now, there was no Perfect Doctor to guide me; I was going to have to be my own case manager. And reluctant as I was to let go of my dream of finding someone to simply tell me what to do, I realized that the central person in my healing could only ever be me.
I am, after all, the only person capable of putting all the pieces of my health puzzle together into one cohesive whole. I am the only person who experiences the physical changes that come with alterations in meds, diet, and lifestyle–changes that can be glaringly dramatic or incredibly subtle. With this demanding, complicated, nuanced disease, I will always have to be the greatest expert.