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Responsum Community Column

Reflections from the Trek—Dealing with a Difficult Diagnosis—Getting Help

Reflections from the Trek—Dealing with a Difficult Diagnosis—Getting Help

No one should deal with a serious diagnosis alone. Responsum PF patient advisor and former chaplain Stephen Berger offers valuable insight into obtaining help.

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We all get help from others on a routine basis.  We take our car to the mechanic when it needs work.  We call a plumber when a pipe springs a leak.  It is our network of people we rely on to help us manage life.

Our network is powerful. Managing that network well should be a central concern because with a serious diagnosis it will probably need adjusting.  Chances are a pulmonologist will enter the picture—one specializing in PF, hopefully.  This doctor may become much more vital to our care than our long-time primary care physician, as may others on the medical team. There will be changes in other areas, too, as we learn who is more or less helpful to us and where we need to adjust.

A number of new people may come into our network while others will recede in importance.  We need to reflect before making choices.  The decisions we make will have a big impact on us.  They need to be made carefully.

A professional counselor is worth considering, as dealing with a difficult diagnosis is complex.  Getting help thinking things through and receiving good feedback can be invaluable.  However, the range of training and skills varies greatly among professions, especially in counseling.  A good counselor is pure gold, but many fall far short of that admirable level.

Some of us have a very good and astute friend willing to help us think through the issues, set priorities and make plans.  If you have a pastor or priest, you may want to get some spiritual guidance in thinking through your priorities and perspectives.  Whether we find assistance in a professional counselor, friend or pastor, having people who can give us insightful feedback and help us keep a balanced perspective is golden.

A wise friend of mine talks about living in the big story.  What she means is living in light of what has lasting value.  We all get drawn into small stories.  There are so many ways our mind and energy get focused on things that really aren’t that important: money, prestige, position, comfort.  It is healthy to keep reminding ourselves of the big story.

But even if we think we are handling everything just fine, how do we know that?  The only way to know how we are doing is to have some kind of measure.  A community is an invaluable source of feedback, but only if it has the right people.  We need to spend less time with friends and family who are less than helpful and instead build relationships with insightful people who understand the PF journey.

Getting into a patient group can be a great way to meet new friends who understand because they are fellow travelers on this road.  Even when we don’t need advice, we need others to give us a frame of reference.  Being in a healthy community helps keep us grounded.

Nobody can do it alone.  We all need help.  Adjusting our relationships is difficult and takes skill.  We will certainly need help in selecting the right people to fill different roles.  However, making network adjustment a priority goes a long way toward helping reduce the uncertainty of living with IPF.

Taking on a big, complex challenge not only requires help, it requires a strategy.  We need a way to organize our thinking so we can properly focus our energies.  In the next column, we will talk about whittling away at a big problem.


(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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