The Patient’s Playbook for Chronic Illness

A couple of weeks ago I shared my review of the new book, The Patient’s Playbook: Saving Your Life and the Lives of Those You Love. I can’t recommend this book enough, and as I read it I couldn’t help but think “man I really want to talk with this guy!”. I’d love to have really just sat down with Leslie Michelson over a cup of coffee, but since he’s located across the country from me that just wasn’t possible. Instead, I was lucky enough to arrange a phone interview. I shared the bulk of that interview over on Healthy Way, but I was also able to ask him a few questions specific to chronic illness and I wanted to share his responses to those questions here.

First off Leslie Michelson was a joy to interview. He went out of his way to make the interview happen despite some scheduling snaffus, and when I chatted with him I found that he’d even taken the time to actually look at my blog and find out what I was all about. That one thing told me a lot about Leslie Michelson, but it wasn’t anything I hadn’t already figured out from reading his book – this is a man who cares about people.

What does Leslie Michelson say about Fibromyalgia and Chronic Illness?

I asked Mr. Michelson what advice he has for those of us living with diagnoses of Fibromyalgia and Chronic Fatigue Syndrome. His response was that these diagnoses are very troubling, “It’s troubling that it gets portrayed in this construct of “it is real?””  He knows that they are real, that “the symptoms are very real and in many cases debilitating. The challenge is figuring out the cause of those symptoms and what is the optimal intervention. It’s probable that there are multiple different causes for different people as it evolves.”

One thing he focuses on quite a bit in his book is creating a good partnership with your doctors, and learning how you can work together for the best outcomes. When it comes to these types of chronic illnesses, his answer isn’t any different. “You need a physician that will team with you and work with you to continuously experiment and fine tune, working with all the different adjustments from diet, to medication, and sleep hygiene until together you find a combination that works for you.”

But, what if you don’t have that kind of relationship with your doctor?

“If you have a doctor that dismisses, that says it’s all in your head or it isn’t real then you need to get a different doctor. Find your courage again and find a doctor that will engage with you in a responsive way and continue to address the problem.”

In The Patient’s Playbook, Michelson uses Steve Jobs story as an example of why you have to really do your research. Steve Jobs chose alternative treatments over the known for his pancreatic cancer and as a result died at a very young age. I asked Michelson his opinion on alternative medicine, here’s his response:

“One needs to be very open-minded as to what works and take into account the nature of the diagnosis as well as the evidence for what might be effective. If you are dealing with something like CFS or Fibromyalgia there is little question that sleep hygiene, diet, exercise, supplements, yoga, acupuncture may have a role for different patients at different times. But, when you are dealing with something as devastating as pancreatic cancer you have to recognize that it’s a formidable foe and those alternative methods are not as likely to be helpful.

You need to look at each patient on a very specific basis. Where we get concerned is when people are going to really fringy things that are really dangerous – very extreme diets, or doctors that are charlatans and claim they can cure everything. People who have deep seated pain and fatigue are very vulnerable to those types of claims.”

I already felt like Leslie Michelson was on my side before I ever chatted with him, but now I know that he cares not just about those with life threatening illnesses, but even about those of us living with crappy chronic illnesses that are misunderstood and hard to treat. He really gets it and it shows. If you’ve not already checked out the preview of The Patient’s Playbook on Amazon, go do it. I’m betting that once you start reading you won’t want to stop.