About one million Americans have cirrhosis and don't know it. When they are told "You have cirrhosis, I'm sorry but we have no treatment", the future that they imagined lay before them dies. It is, in a very real way, a death of self.
We all know that we will one day die but we hold a sense of how we think or hope our future will unfold. There is a continuity that flows with the preceding events in our lives as a single journey. If you have no warning, as so many liver disease patients do not, and your first information is that you have cirrhosis, a probably terminal illness, the self that you have known dies. The life you thought you were living no longer exists and a new unbidden and unwanted future is before you and you must find a way to reconcile yourself with that new reality.
We have all known the loss of a loved one and the various stages of grief that are part of that experience are well known. The death of self creates a similar response for many with liver disease as it is a silent killer and, for many, only becomes known when it is beyond treatment by your doctor. That pronouncement triggers a grieving process that largely goes unrecognized by medicine or by those loved ones around a patient. We are expected to grieve for the loss of a loved one but we are expected to be brave when our future self has died. A far kinder approach would be to understand the journey, so what are the stages?
- Denial - many patient's first reaction is "that can't be I'm not an alcoholic"
- It is a common stigma that cirrhosis is the disease of old drunk guys. Many patients first reaction is disbelief and denial. They lack the cultural knowledge about the disease that would allow them to quickly connect with that diagnosis.
- Alcoholics face a similar moment but the news is unlikely to come as a complete surprise.
- Fear - Fear is the mind killer.
- As a society we don't understand the essential facts of liver diseases like NAFLD and NASH.
- The lack of a general awareness of disease greatly amplifies the fear associated with it.
- It also distorts the interactions with the doctor because as he is trying to explain the problem fear has compromised the ability to learn and understand a complex problem in the time a doctor has to spend explaining a diagnosis.
- Most patients leave that encounter with a poor understanding of the problem and heightened fear.
- Anger - A common lament we hear is "my doctor has been seeing me for years, why didn't he warn me?'
- A variation is "they said I had fatty liver years ago but no one ever told me it was dangerous".
- As patients learn that the strategy of medicine is to not deal with advancing liver disease until overt symptoms occur, it is common for the response to be anger.
- In fairness they have surely been told to lose weight and exercise but the seriousness was never really internalized. Whatever teachable moments may have occurred along the way were missed.
- Depression - A majority of cirrhosis patients deal with depression.
- There is a hopelessness connected to a diagnosis with no hopeful messages.
- One of the first things patients do after diagnosis is consult Dr Google. That is a terrifying land filled with every kind of painful tragedy and vast amounts of contradictory and confusing information.
- Depression in any setting is a difficult medical condition but doubly so when linked to an advancing dangerous chronic disease.
- Acceptance - Given time and good information many patients do come to grips with their problem.
- They learn that diet and lifestyle can be useful therapy.
- They learn coping skills from other patients
- They develop support systems that assist them
- They accommodate a new vision of self that in on a different path but isn't devoid of hope or joy
On this memorial day, it may be useful to reflect for a bit on the mini-deaths that are so often a part of our lives. We honor the deaths of soldiers specifically today, but tragedy and loss are common companions at multiple points in our lives and those pains and losses are too often met, not with the compassion we accord physical death, but with silence and even negativity.
As the Fatty Liver Foundation we serve a particular slice from the pie of misery that is part of the human condition. Liver disease is one of the more challenging as it is a silent killer but this process of grieving for oneself is a part of life for most. A kind society will support those in need as from time to time the breakers of life flood the sand castles that we imagine as our futures.