What does it mean to have hope with PF? When should you release hope and move toward acceptance of new realities? Former chaplain Stephen Berger explores these vital mental health issues.

One of the difficult challenges facing PF patients is the ongoing dynamic of hope versus acceptance.

There is no cure for PF.  It is important for our emotional health to come to terms with that fact.  However, there must be hope.  Without hope, why do anything to improve our outcomes?  Why enroll in pulmonary rehabilitation?  Why should a smoker stop smoking?  Why change diet and exercise habits?  There must be hope that investing in treatment will result in positive outcomes—not a cure, but real improvement that we experience.

In the ongoing dynamic between hope and acceptance, we hope that by going to great doctors, exercising, watching our diet, and doing all the other things that are recommended we will improve our lives.  Then the disease progresses.  An exacerbation occurs.  Our efforts are overcome.  We find ourselves in a vicious cycle, trading hope for acceptance.

Grief is the label applied to the process of moving from hope to acceptance.  I am not sure that is the best label.  I know that the linear model of grief, first developed by Elizabeth Kübler-Ross, is wrong. It is fatally flawed by unconsciously adopting a medical model of this cognitive process. Grief is not a disease with set stages and an orderly progression from one stage to the next (Figure [1]).  Grief is an emotional and cognitive process for coping with loss and change. The fact is that we engage emotionally with our circumstances.  Our circumstances change or fail to change, after we try our best to change them, and we have emotions. We have feelings, often very strong feelings, about the difference in what we were looking forward to and what happened.

Figure 1 - Flawed linear view of grief based on a medical model

Kübler-Ross’ contribution to the field was enormous.  She identified the various emotions that can occur as we face our circumstances.  She had great insights about grief. Some may actually go through these various emotions in a linear progression.  However, it is a more cyclical pattern for most of us, as Kim Fredrickson describes in her book. [1]  This journey has many losses and unexpected twists.  Some are small and others have great impact on us.  As they happen, we have to adapt our thinking and work our feelings about these losses.  Different losses will have a different impact on us.

For PF patients and those who support them, we want to find a basis for hope and motivation to do the things that will benefit us.  We need to find a basis for making needed changes and adopting habits that give us the best chance of improved outcomes and better quality-of-life along the way.  Woven into earlier columns I have written are the places I have found hope in my journey.  I plan to talk more about my personal basis for hope in the future.

Times come when acceptance is necessary.  There is a regular series of facts that we have to accept and come to peace with.  It isn’t just accepting our diagnosis, which is the big fact we need to accept and find a way to live in peace with.  There is an ongoing series of losses and problems that we need to come to terms with and accept regarding independence, functionality and planning horizon.  We may have been the strong one to whom our family looked for strength.  Now, we may need their help. We can no longer “soldier through.” We have to pay attention to what our body is telling us.

When it hasn’t given us the desired result, we need to release hope and move through the acceptance process, both in our thinking and emotions, to get to a peaceful place with a new reality.  It isn’t easy and a one-time event.  It is also never a one-size-fits-all process.

What then is the reason for the linear, medically-based model of this process?  I don’t know, but suspect it arises from a subtle shift to focusing on the therapist or medical professional instead of the patient.  Those that deal with PF patients see a lot of people.  Dealing with them as individuals take a lot of time and become unimaginably complex.  Much easier to have a medical model with five stages. The therapist forms an opinion of the stage a person is in, dispenses the therapy appropriate for that stage, ends the session and calls in the next patient.  It fits the scheduling structure, which is the only thing it does well.

"Our reality is that life is dynamic. It is a judgment call whether hope or acceptance should dominate at any point in time. Moving from one to the other is intellectually and emotionally difficult (sometimes very difficult)."

Sometimes, we need to move from acceptance to hope to find the energy and enthusiasm to make beneficial changes.  Other times, we need to accept a new reality, release a hope that hasn’t worked out, and find peace in accepting the reality we are living.  It goes both ways.  There are no magic formulas or fixed diagnostic tests.  Having help is good, very good.  But it is our journey.  We have to find our own way of dealing with PF intellectually and emotionally.  We have to change our thinking and emotions to fit our journey.  It isn’t easy and it isn’t linear.  It is dynamic and, when we get it right, greatly benefits us through both the good decisions that come from seeing our current circumstances accurately and the peace that can result from the right emotional response for the moment.

In the end, this is about getting our beliefs and thought process right.  When we have the right beliefs about our circumstances and think about those beliefs correctly, we will make good decisions and take the right actions.  Faith and belief are often thought of as belonging to religion and not being very practical.  Faith and belief are religious terms, but any discussion of values and ethics is ultimately a spiritual discussion. Yet, these are also deeply practical terms.  I am a good engineer because I have correct beliefs about the laws of physics and know how to think about those beliefs to make the right decisions.  I and other engineers believe in these laws and know how to calculate the formulas, and so you get to have a cell phone, laptop, car and house.

It is the same with PF.  When I get good information about treatment or pulmonary rehabilitation, I form my beliefs about how best to deal with PF.  If I am careful in how I think about those beliefs, I will make good decisions and get the best outcomes possible.  I will have hope in the right areas, focusing my energy on what I can impact; but at the same time, accepting as facts what I cannot change.  I will be at peace and live with joy for the life I have.

[1] Diagram showing two possible outcomes of grief or a life-changing event developed for Job centre Plus by Eos. Obtained from: Wikipedia

[2] Kim Fredrickson, Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You, 2018.

Stephen Berger, Responsum member since 2018