Adapting to Limitations: Is Your Doctor “The One?”

by Joan Friedlander

Note: this article represents the author’s experience and should not be construed as medical advice.

Over the course of the 24 years I’ve been navigating this journey through my disease, I’ve been treated by 9 gastroenterologists. I’ve been treated by the best, the so-so and the scary. The best took a collaborative approach – he is the doctor I was working with when the symptoms went into remission. The worst are overbearing and unyielding, prioritizing statistics and rigid prescriptions for disease management in order to stick to the norm, even if it might not be right for your body.

Admittedly, I’m an idealist. I would like to think that it is possible to find medical professionals who are excellent scientists and technicians in their specialty, yet open enough to entertain complementary or adjusted approaches to disease management and recovery. I continue to be shocked when I meet a new gastro who can’t seem to entertain the possibility that the currently prescribed protocol is actually working.

I’ve run into this twice in the past 5 years, the latest with the newest doctor. My symptoms are being successfully managed through the use of Remicade, one of the standard medicines prescribed to suppress an overactive intestinal immune response. Instead of remarking on the fact that this has been working for me for 11 years, he launched into a speech about why it shouldn’t be. His objection? I’m not receiving the normally prescribed dose of Remicade at the normally prescribed intervals.

In both cases where I got push-back, it didn’t seem to matter that this protocol was prescribed by a gastroenterologist, the one I was seeing when I got well. Nor were they swayed by the colonoscopy results from the previous 11 years that verify remission, which I carry with me to each new doctor.

Disease Management is an Imprecise Science – Why This Myopic View?

Medical care, at least in the United States, takes a “collective” approach to treatment, meaning treatment is based on statistical averages, what works for the majority of people based on scientific studies. For sure, it’s efficient, and these averages are legitimate. However, they simply don’t account for individual variances. In my experience, they are offered as sweeping statements of fact, and often times the variables that can alter these statistical averages are not presented either.

I’ve been told several times that my chances of getting colon cancer after 7-10 years living with this disease is 10 times greater than the average population. When the latest doctor laid this in front of me I asked about the statistics for the general population. He didn’t know! He guessed that it is 1 out of every 250 individuals. That would mean 1 in 25 of us with an inflammatory bowel disease are likely to get colon cancer. On its own, it’s a daunting number, something to be taken seriously. Yet, it would also mean that 24 out of 25 of us won’t. That statistic is never shared. You have to flip the math on your own.

Note: Neither of these numbers are correct, pointing to the real danger of whipping out statistics without explanation. Click here to read what the Crohn’s Colitis Foundation has to say. http://www.ccfa.org/resources/faq-colorectal-cancer-ibd.html)

Managing your Healthcare Team – Who Do You Trust?

Following are my top 3 criteria for determining the value of my health care team members. I apply the same criteria to traditional medical providers as I do to any complementary professionals I might see, such as Natural Doctors, energy healers, etc.

• Are they open to alternative or complementary approaches to disease management? They don’t need to have direct knowledge, or even suggest other approaches, but they need to be aware and open. The doctor I was seeing when I got well displayed this quality right away. At some point he said to me, “I don’t care how you get well, I only care that you get well.” No ego! The same goes for complementary health care professionals. They too, have to see what they do as one healing tool, and not THE answer.
• See the doctor-patient relationship as a partnership. They are not G*d (or my parent) and I’m not a child. They are human beings who are highly skilled in their field. I am the human being living in my body, the one who has the most direct access to what is working and not working. If they can’t consider my perspective, they are not a good doctor for me.
• Respect your concerns and take time to address them. I do want them to understand the latest medical developments, and to be able to state their reasons for suggesting a particular approach. However, if I express concerns, I need them to give them enough credence to help me understand why the risks might be worth it.

It’s Up to Us

Yes, we need our medical professionals. They are the experts, but they don’t have all the answers. They can’t. We are individuals, doctors are humans, and medical discoveries are ongoing. There is no “this is the answer.” The pathway to healing is as individual as each of us are unique.

The next time someone asks you, “what did the doctor say?” you might also share your experience of said doctor. Do you trust him or her? Were your concerns and views considered? Did they use statistics to bully you, or did they offer you information and ask you if you have questions?

Joan Friedlander | About the Author

Joan Friedlander is the author of “Business from Bed” and co-author of “Women, Work, and Autoimmune Disease.” Joan is an expert in working and living with chronic or serious illness. Through writing and coaching, she guides men & women who are called to reassess their direction in life – and business – in the wake of a health setback. For more tips from Joan, visit www.businessfrombed.com.