How to educate your doctor
I met my new MS neurologist last week. My old one retired, thank God. Every time we met over 20 years, I left his office feeling helpless and hopeless, sometimes in tears. He was gentle enough, and quite kindly, but my final meeting with him last year was the worst. He saw I was better but wouldn’t acknowledge it. He implied I was lucky.
I’ve lived with MS for 27 years. It’s a chronic inflammatory disease that, about 6 years ago, was progressing fast and taking away my quality of life. That’s when I was ready to take what seemed like a desperate step: to go on The Wahls Protocol.
Dr. Terry Wahls is an MS patient herself. She devised a gut-health protocol of diet, exercise and meditation. Within three months my most debilitating symptoms—vertigo, extreme fatigue and dizziness—all stopped. I regained energy and stamina I hadn’t had in ages. My blood pressure had crept up to and I'd been on medication when I started. Within a year my BP was normal and I was off the meds. I lost twenty-five pounds too.
The diet was one part. Then there was the exercise. How? What sort? How to deal with spasticity, balance, pain, walking?
Then in 2017 The MS Gym went online. What a resource! Coach Trevor Wicken explains clearly how MS affects muscles and movement. My doctors never even suggested I learn this, but it’s invaluable. Now I understand what I can do to counteract it. The MS Gym also provides emotional support, weekly motivational videos and a community of people like me. I’m no longer in the dark as to what’s going on in my body. The fact that MS is irreversible does not mean there’s nothing you can do. Tens of thousands of people also on the Wahls Protocol and the MS Gym are seeing significant improvements too.
My former doctor said bluntly that diet and exercise were not relevant to my health. He never ever suggested any sort of education, and his idea of emotional support was a pat on the back. I was so infuriated after my last visit that I wrote about it here in my most popular post to date: “The Healing Power of Hope.” It seems I’m not the only one frustrated by closed minds in the medical establishment. Don’t get me wrong, a skeptical attitude is key to scientific knowledge. But claiming that diet can't affect health is both antiquated and irresponsible--especially when it comes to chronic disease.
So here I was with Stephen at the new offices of the new doctor. The waiting room was bright and cheerful. This was an improvement over those old windowless offices. I was encouraged and a little excited. Perhaps we’d meet younger doctors here, with a broader perspective. After all, mainstream medicine has confirmed the complexity of the microbiome and established a definite correlation between gut health, inflammation and quality of life. It appears to be particularly significant in chronic illness.
We were greeted by two young neurologists, a somewhat older male doctor and a younger female intern. I told them enthusiastically about my lifestyle changes over the past six years. They nodded politely but we could see an invisible line. They weren't crossing it.
The examination is a series of standard tests that measures your disability score. Although I have secondary progressive MS, the disease didn’t worsen since my last exam. In fact, I feel better. It's not supposed to happen. Predictably, they chalked it down to good luck.
Stephen asked, “So are there any breakthroughs we should be aware of?” The young intern brightened up and offered a new drug that might improve my walking by 20% or so, but could cause seizures and harm my kidneys. And I’d have to take it for ever.
I had another question. "How do you support your patients through the emotional, mental and physical turmoil of MS? What do you offer besides drugs?”
For a moment there were just two blank stares. Then the young woman admitted that yes they could use some help with that. She took my card, though I’m not expecting a call.
She did say that exercise helps more than anything, but she had no idea what kind of exercise. How to do it, where to find a good therapist? Exercising when you suffer from extreme fatigue, spasticity and pain requires a lot of support, but all they offered were drugs. Neither had ever heard of Dr. Wahls, or the MS Gym. They seemed unaware of any non-pharmaceutical approaches. I felt bad for them, and worse for their patients.
Doctors are amazingly educated in some ways and astonishingly ignorant in others. We patients want to think of them first and foremost as healers, which means understanding and empathizing with their patients. But when they focus on science to the exclusion of people they undermine their own healing powers.
People with chronic illness need tools to navigate the rest of their lives. We need to know what's going on in our bodies, and learn about ALL our options so we can make better decisions for ourselves.
We’ll meet again in 18 months.
It’ll be interesting to see if they make any progress.