WHAT IS A ‘PROFESSIONAL PATIENT’?
(and is it good or bad?)
The professional patient doesn’t really exist. It’s just a name Kees came up with for people who are constantly focused on their disease, as if it is the most important thing in their life.
They’re on top of all the latest developments, are (extremely) active in peer contact groups, continually read (and write) about the illness. In short: they get up and go to bed with it.
That in itself is absolutely FINE! And as it is with everything in life: you shouldn’t overdo it. Of course it is important to know what new treatments are becoming available, of course it’s useful to know what diet is beneficial and what supplements you might need, but is it helpful to be at it all day every day?
SO WHAT COULD BE THE RISK?
A sentence you could well hear any coach utter is: “Everything grows, where attention goes”.
So that means your Parkinson’s would grow if you’re constantly thinking about it and doing stuff that is related. If you remind yourself of it constantly, chances are your symptoms bother you more and progression might seem faster than it actually is.
Moreover: Whenever your attention is focused at the illness, it is unavailable for stuff that may actually be more important to you, your life, your health and your relationships!
AT WHAT LEVEL IS PD ORRURRING FOR YOU?
You probably know the discussion around ‘having PD’ or ‘being a PD patient’.
Being is incurable and having is sort of a choice. This difference makes a difference in the emotion you attach to a disease.
Also ‘taste’ the difference between:
• ‘I am a smoker’ or ‘Now and then I smoke a cigarette’ and
• ‘I am overweight’ or ‘I’m carrying some excess pounds’
But there are more levels for experiencing a disease. These are the 6 logic (or neuro-logic) levels Nobelprize winning biologist Gregory Bateson distinguished between. From high to low these are:
• Contribution: To what bigger whole do you belong or contribute?
• Identity: Who or what are you?
• Beliefs: What do you know to be case, what is the truth for you?
• Skill: What can you do well?
• Behaviour: What do you normally do?
• Environment: In what situation are you?
At each of these levels you could say something about PD. For examples look at the list below.
Read them out loud as if they are the truth for you, the typical way in which you tell other people about PD, and feel the differences in your experience of that.
• Contribution: “Helping other people with PD is my life’s goal.”
• Identity : “I am a PD patient.”
• Belief : “PD is an affliction I have.”
• Skill : “I cope with PD very well.”
• Behaviour : “I do PD on the side.”
• Environment : “PD is a chronic disease.”
Notice the huge difference between these simple, little sentences? What level do you use most? Would it benefit you to drop a level or two?
HOW TO PREVENT FROM BECOMING A PROFESSIONAL PATIENT
If you are under the impression that the description of a professional patient applies to you at least partially, please answer the following questions:
• What is most important in my life?
• In sync with that, what are my main goals in this life?
• Does my focus on PD bring me closer to these goals or not?
• Is there anything I would change right now?
A lot of people will discover that their main goals are to do with love, self respect and appreciation. If these goals are utterly and completely met by focusing on PD and sharing knowledge and experience, go for it!
And it is also possible you find that your goals are much closer to home: with your partner, kids, extended family, friends, church, clubs, charities etc.
If the latter is the case, would you want to shift focus a little?!
SHARE THE BURDEN!
One last tip to help you maintain a healthy balance: Within Parkinson’s Foundations and any other peer groups, there are always possibilities for cooperation, for sharing the workload. You’ll have to spend less time yourself and have more social gatherings in which to mutually share what you found out.
As always: please share experiences, views and additions in the comment box below!
Warm regards, Koen Lucas, Health Coach