When I first got my diagnosis, it was “General Quarters! All hands to your battle stations!” Some things changed quickly and became permanent. However, it surprised me how, after a while, life just returned to normal. My old priorities, habits and patterns kicked in and governed how I thought and where I put my time and energy. In some areas, this was just fine. Some areas didn’t need a lot of change. But a number of areas that needed improvement just went back to my old patterns.
As I have observed myself and thought about this, I realize there are a couple of dynamics at work. One is that I tend to stay with my former priorities and keep doing the things I am good at. However, are those good things I am getting done the most important things now? The other is that, while I may know improvement is needed, I may not have the skills to make the change.
It is good to regularly reflect on where I am investing my time and energy. If my resources are going where they do the most good, then GREAT. Pat myself on the back! But what I too often find is that I am falling back into old patterns and habits. I need to create new patterns and habits to better serve me under the current circumstances.
When I am really honest with myself, I have to admit that while I know improvement is needed in an area, I may not know how to make it. That is a good time to get outside help. However, getting the right help is a very complicated assignment. If we think about any area that needs improvement, we can quickly think about many ways to make the needed change. Take exercise. Some of us might get a set of exercises from a pulmonary rehabilitation expert. Others might find that yoga, tai chi or qigong is a better fit for them. We want to find a coach that is a good fit for us personally and skilled at the method that works best for us.
A problem we face is that if we aren’t good in an area, how are we going to know the best approach or what to look for in a coach? We just said we don’t know what we are doing, so now we have to select someone to help us. This takes real wisdom. Referrals are a good tool. But be careful of your sources. In my experience, people who talk a lot about their amazing results are more often seeking attention than giving good information. We must be observant and spot those who are truly getting good results. We may need to seek out these people. In my experience, they are the ones that will give a more balanced and insightful recommendation. It is common to hear from these kinds of folks, “This works well for me and here is why… But it might not be the best choice for you because…”
That is usually advice worth listening to. Every approach tends to work under a particular set of circumstances. If you and the person giving you advice have the same set of circumstances, you will probably get the same results they get. However, if your circumstances are different, then what works for them may not work at all for you; in fact, it may even do harm.
This is a dynamic process. We are changing as our disease progresses, but also as we make useful changes. The area that most needs change may get it. There comes a point where we have made enough progress in one area that further time and energy are far more productively put into other areas. I think of this as “calling the turn” and these are hard calls to make. Just when we are feeling good in one area, we need to focus on something we aren’t good at. That goes against our nature. So, we work on one thing. Then, we move to the next, and then to the next. After a while, we come back to an area and find something has changed. Or, we see an opportunity for improvement we didn’t see before.
Some time ago, I learned a planning process that divides the set of actions we might take into four quadrants, based on our future goal. On one axis is how good we are at something. This might be exercise, diet, home air quality, quality of doctors, or any other area we might invest time and energy. On the other axis is how important the area is to our future.
With time, brutal honesty and persistence, we will establish patterns and habits that bring us significant benefit. We will have done the best we can for both ourselves and those who care about us.
Making changes isn’t easy. Sometimes the changes we need may be in an organization we depend on for healthcare. When systems and companies fail in their patient focus, we need to become our own advocate.
In the next column, I want to start talking about how we can advocate for ourselves.
(This article reflects the experiences and personal opinions of its author. The Pulmonary Fibrosis Foundation has neither reviewed nor vetted its content for accuracy.)
About the Author: Stephen Berger has been a Responsum member since 2018. He is an engineer who focuses on developing consensus solutions that apply technology to societal problems, such as wireless in healthcare and disability access. He also has a Master of Theology degree from Dallas Theological Seminary, is a member of the Evangelical Theological Society, and was a volunteer hospital chaplain. A Responsum patient advisor diagnosed with IPF in 2017, Stephen thinks a lot about faith, hope, values, and how to navigate the complex challenges we all face with grace, integrity and authenticity.
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