What do Politics and Chronic Disease Have in Common?

I was asked to review a letter from Dr. Rob Lamberts titled “A letter to patients with chronic disease”. Dr. Lamberts appropriately portrays physicians as having insecurities, frustrations, and expectations “Just like anyone else”. He goes on to give advice to patients on how to positively partner with physicians. As I read the article, I found it to be a good example of how people (both patients and physicians) can become frustrated when they do not have a common set of expectations.

In my practice, I frequently refer to the definition of frustration. Frustration is defined as stress caused by not meeting our expectations. When we are frustrated we have only three choices:

  1. Continue to be frustrated - unfortunately, this is what most of us choose by default when we don’t consciously choose one of the other two options.

  2. Work harder (or smarter) to meet your expectations - since most people who are frustrated are working very hard, the “work smarter” option is usually the one to consider most. Dr. Lamberts outlined several ways to “work smarter” in developing your relationships with physicians.

  3. Change expectations - it’s important to note this option says “change” not “lower” expectations. It is also important to be aware that when most of us are very frustrated we usually have expectations that don’t make any sense (we all do it). I will spend most of the rest of this article discussing how we might “change expectations” or at lease to be more aware of them.

So what do politics have to do with expectations? In my opinion, this current election cycle (sadly, like our last few) highlights more than ever that people have widely different views.

Once more, there are very few examples of politicians who bridge the gaps between views. More and more, we have a political culture of “black and white”, “right and wrong”, “conservative and liberal” and “us and them”. It seems most of us have expectations that others will agree with our point of view. This leads to lots of frustration and very little productive discussion. Some of us can’t even hold a conversation with people of opposite views and bringing up political discussion is a social “no-no” in many settings. Yet, I have also found that there is a strange sense of peace in entering into respectful discussions with people of opposing views. I have a tendency to be quite conservative in my views. Some of my adult children have much more liberal tendencies. I love talking politics with them. We don’t have expectations of changing each other’s views (more importantly, we try not to). I learn a lot from them and they challenge me to think in different ways. In the end, I feel closer to them and I feel like I have grown.

Interacting with a physician who does not understand Post-Polio can be like having a political conversation with someone you don’t know. Having treated Polio survivors for over 20 years, I understand and have heard lots of less than positive stories about physicians who “don’t get it”. The relationship can easily become frustrating depending upon expectations. So here are some of my own “tips” to avoid frustration with your physician:

  • Don’t expect a physician to know your goals, questions, and concerns.

    • Prepare for appointments by writing down your most important questions.

    • If you have a specific functional goal, express it clearly.

    • If you have a fear or concern, share it.

  • Don’t expect a physician to “fix everything at once.”

    • It’s fine to have a long list of “problems” to share but clearly prioritize the most important and express your desire to work on the top one or two.

  • Understand that physicians have a desire & expectation to help.

    • Consider using the words “I need your help with …..” to try and focus common expectations. You may be surprised to see the physician sit taller and make immediate eye contact.

    • Express thankfulness in the areas that the physician has been helpful, even if there’s lots more to work on.

  • Set a tone that it’s ok to disagree

  • Instead of reluctantly taking a prescription, say “Can I think about that?”

    • Recognize that it is very frustrating for a physician to think that thee is a mutual plan to try a certain medication or exercise only to have the prescription never filled.

  • Openly communicate about complementary medications or approaches that you use and ask “Do you have any specific concerns about….”

  • Set and expectation of mutual respect nd trust.

While some physicians are egomaniacs, most have simply invested an enormous amount of their life to be in a position to help others. It is reasonable that most have an expectation to be respected. On the other hand, it is not always as clear that patients have an expectation to be respected. If you genuinely feel that respect and concern is not coming your way, then find a way to appropriately express your concern or move on to find a practice where you can have mutual respect and trust. While these points might sound logical and straight forward, the reality is that physicianpatient dynamics are sometimes difficult to address. Like any worthwhile goal, it can be tough. But what is the alternative – feeling stuck in a place you don’t want to be or dreaming that things will somehow get better on their own?

In his books “Quitter” and “Start”, author Jon Acuff discusses career development in a way that mirrors our discussion. He describes that most people look at their work in one of two ways. Some are 9 to 5 workers who are focused on the present and see little hope for something better. Others are dreamers but do nothing to make their dream happen because they do not acknowledge the reality of their current situation. Some however, don’t fall in either camp. They occupy the painful, difficult and awkward ground in the middle where they are free to dream but also are fully aware of their current situation and resources. These are the most productive people in career development.

It is my hope that Polio survivors can see the challenge of developing productive relationships with health care providers in this same light. It is important to clearly define your current circumstance as well as your goals. At the same time it is essential (unlike politicians) to not get stuck in gridlock caused by inflexible expectations.

William M. DeMayo, MD

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