I have written this article because on many meetings when having talked
about all the difficult things, such as on-off, tremor, stiffness,
constipation, sleeplessness and so on, something very positive stand
forward which we experience but not talk much about:
Disease as a challenge.
A theme in the new role of the patient.
by Svend Andersen, Psychologist and Parkinson patient
It looks as if, when the difficult adaptation to the changed life is
reached, that the serious chronical disease also opens a possibility for
transformation in the direction of the good life, with possibility for
continued growth.
Disease is not only limitations and negative things, disease is in itself
a challenge in ones life, because it also points to its opposite - the good
life.
Disease gets one to think about the meaning of life and to live the good
life while you have it.
A concept of health for the chronically ill in this meaning settles with a
tendency in our culture saying that all pain, disease and abnormality shall
be fixed or removed, and preferably quickly.
People with a chronical disease as Parkinson can not be fixed, they have to
learn to live with the disease.
A concept of health for people with chronical disease comes to be "the
great YES to life". The yes that says yes to both the light and dark sides
of life.
>From this yes a humility and respect for life is growing and a happiness
and love for life. And it looks as if persons who are struck by
difficult things in life as a chronical disease, are confronted more
clearly with these realities, and therefore obtain the possibility to get a
better grasp on these things in life. And this gives them at qualitatively
better life.
They say: "These are my realities, and how can I use them for the good
life?"
Three ways in which to be a patient.
Being labelled as a patient is an unexpected as well as an involuntary
occurrence in your life. If you look at the content of the role of the
patient and how people experience being patients, it is often quite
different from person to person and mainly connected with negative
feelings.
Bernie Siegel (1) declared:
That approximately 15-20 per cent of all patients are what he calls
exceptional. They are looking for solutions, they interpret problems as new
guidelines, they maintain a stubbornness - an ability to adapt and they
become more self confident. They maintain a positive outlook on life and
they express a love for themselves and others.
That 15-20 per cent resign when diagnosed as having a life-threatening or
chronic disease.
That 60-70 per cent of all patients undergo treatment passively without
trying to influence their own situation.
By this Bernie Siegel among other things tells us that it is possible to be
a patient with a high quality of life.
When working with the change of the role of the patient you realise that
there is a life-giving way to be a patient. It looks like many patients and
carers experience disease as a challenge. And maybe most important, the
good life is what is in awareness in the daily life.
All questions about symptoms are asked for moderating them or overcoming
them. Behind these questions is the more important: "How can I live a good
life despite disease?"
If you consider disease as a challenge, then you want to look at the
unusual road these patients have taken. You can look at the obstacles they
have met on their way and how they have managed and overcome these
difficulties.
You can then plan seminars for Parkinson's patients so they can acquire the
necessary informative knowledge, the emotional support and concrete
directions for action.
In the light of this, the other two groups of patients, that are mentioned
by Bernie Siegel, are looked upon as patients who have been stopped by some
of the obstacles on the road and need help to set up the goals again and
get back on track.
So we can begin asking questions more directly in that direction.
What do patients and carers answer?
About 100 patients and carers were on a educational day asked what good
they had got from Parkinsonīs disease. 23 patients and carers answered. A
part expressed they would answer later, others did not answer, and for now
it is being investigated if they did not want to or if they were not able
to.
To look at disease as a challenge demands that you for a moment dare let go
of a habitual way of looking at disease, namely only look at disease as
something negative.
It looks as if many seriously ill people of their own accord, when they
acknowledge the changed realities and say yes to them also, find a point of
view more, because disease also points to its opposite - the good life.
Here follows a summary from the 23 patients and carers who answered.
1. I spend more time together with spouse and children. Time to enjoy
making new things in my garden, enjoying nature and a ride on my bicycle.
Having great pleasure being a patient-visitor taking an elderly out for a
walk.
2. A different life, but not inferior to that before. We have got a closer
relationship and are more thankful and aware of small things. We have met
many good challenges and have won some victories. Being together with other
patients is one of the things that gives us pleasure.
3. Searching in one self - what do you want in your life. Dare taking a
decision. Quit working-life if you have the possibility. Do what you want
to do if you have the desire and energy.
4. Having learned not to take things for granted. Use all possibilities
each day. Greater understanding/patience in relation to others. Having
learned to accept your own limitations and also others limitations.
5. I am so lucky to have a good neurologist and a clever family, so I have
good help. My every day life is not that different from earlier, except
that I now have learned to live with my Parkinson. I am except from the PD
healthy and well and have never had a day with sickness before now.
6. Disease has given new perspectives in life: to live here-and-now,
having learned an optimism and a lighter and more positive look at life.
The aggression is a healthy reaction in a difficult life-situation, and the
aggression can be turned around to something else. It is far more difficult
with the apathy and the surrender. The aggression can be a step on the
road. Let us focus the light on it as one of the positive patterns of
reaction, on the road to the better life. To be at some value for others
enriches life.
7. That life is more than work.
8. Greater patience, and greater understanding for other people and other
values in life.
9. We have as far as possible slowed the tempo down and spend more time
together, go on holi- days as often as possibly. The talks with the doctor
and with each other have developed greater openness and togetherness in our
relationship. We are more often happy together and are appreciating the
everyday pleasures.
10. Have got more peace in mind. It seems that experiences are more
intense. Have got new friends. Pleasure in helping.
11. I have participated in more good lectures and excursions, have met
people I otherwise would not have met. In the Parkinson magazine I read
articles and other things that I otherwise would not know about. I read
what is to be read about Parkinson. In a way I am closer now to the person
in my family who has Parkinson.
12. More time for grandchildren and spare-time occupation. You are more
concerned about people who are in a worse condition than yourself.
13. I do not like gym. I have never been good at it! But the fact that
exercise is vital did that we agreed in buying an allotment two years ago
although we until then never had had a garden before. We get a lot of
exercise, each muscle is stretched and relaxed each day. We won the yearly
cup this year. I do not think of Parkinson except at the moments he "kicks"
me.
14. I have got time to be occupied with things I had no time for earlier.
I have got greater pleasure in working with things at home and things close
to me.
15. Parkinson has given me more close relationships and mutual
understanding.
16. When I got my pension, I sat down to find out what to do in my
everyday life. I chose singing, yoga and painting. And it was the painting
which gave my life a better value than before the disease. I had never
started painting if there had not been changes in my life. I am painting
every day, I often have exhibitions, I am selling paintings, and I find
life much more exciting than before. At the same time the work in the
Parkinson Association engages me and gives me a daily pleasure in helping
others.
17. Even with the problems that inevitably come having a Parkinson patient
in the family I think it is possible to have a good life. In a way you get
closer to each other. You have to learn to accept the changes.
18. More time to be together with your children.
19. More time together with ones spouse. Better years of growth for our
children. Possibility for me as care-giver to do things that interests me.
There is more time, because my husband is home.
20. We only have this life. In the everyday life you come to think more
about your limitations. I am only a little tired around closing time.
21. You can use the disease to be more open to life around us.
22. I have learned to have a more positive look at the small things in
everyday life. I have given myself more spare-time occupations than before.
23. I can not see anything good in the disease, it must be a healthy
doctor who has invented this, as an expression of helplessness.
The answers that both patients and carers are giving shows, that the
disease does more than setting limitations in ones life, it also opens up
for possibilities in direction of increasing the quality of life.
What is important also to point to here is that also to the carer and to
the family the disease opens up for new possibilities in the direction of
increasing the quality of life.
Health = The good life
When you live with a chronical disease as Parkinson some questions about
disease and health arise. Is it possible to be healthy when you have a
disease? Can the persons who has answered be seen as persons where the
disease has started a process towards greater health?
The concept "health" is one of the big concepts, that can not be defined in
only one way, but if one asks ordinary people about what health is, then
they define health as "the good life". And they say that health is
something more than absence of disease. Common peoples understanding of
health is very varied: Nutrition and exercise. Attitude towards life.
Autonomy. Good social relations. A well functioning family. Meaning with
life. (2)
It looks as if common people distinguish between being ill-well and health.
That one can be healthy both as ill and well.
One can also understand such at concept of health on line with other
difficult things in life as the death of a friend or close relation, to
loose a limb, to be without work. And that health is about how to handle
these difficult incidents and at the same time go on living the good life.
In this connection it is exciting to look at a concept of health that a
researcher Carol Ryff from Michigan university in USA (3) has set up. She
has made a comprehensive search through literature about quality of life
from Freud and Jung until our days modern research. From this research 6
points stands out as adequate to health:
Self-acceptance
Positive relations with other people
Autonomy
Environmental mastery
Purpose in life
Personal growth
Parkinson patients and carers do not think in theoretical and scientific
concepts but there is a clear agreement between the answers from the
Parkinson patients and the concept of health that Carol Ryff sets up.
Closing remarks
It is important for the person living with a chronical disease to have a
concept of health which includes that you can be healthy and at the same
time have a disease.
And more important to have an understanding that disease can start a
process toward greater health in the patient.
And even more important - when disease has thrown one off the road of life
- to have some values to pilot you through the crisis and further to help
you steer for health again.
Focusing on "disease as a challenge" - parallel to meetings and seminars
about medical treatment, nutrition and exercise - the perspective is drawn
upon an important aspect of living as a patient diagnosed with a serious
chronical disease as Parkinson.
(1) Bernie Siegel ( Love, Medicine and Miracles, Danish Publisher.
Munksgaard 1988)
(2) Uffe Juul Jensen & Peter Fuur Andersen: Sundhedsbegreber - filosofi og
praksis. 1994
(3) Carol D. Ryff: Psychological Well-Being in Adult Life. In: Current
Directions in Psychological Science, vol. 4, nr. 4, 1995
