The Psychological Impact of Scleroderma
By Shirl Tarko-Halpern
(originally published in "Scleroderma Voice,"
2003 #2)
This article is about a side of scleroderma that receives
too little attention—its psychological impact
on the affected individual and his or her family.
I am a 48-year-old psychotherapist, diagnosed with
diffuse scleroderma two years ago. It has taken me that
amount of time to sort through my reactions and feelings,
begin to adjust to the change in my sense of self and
my life, and regain some sense of equilibrium.
The Story of My Life Has Changed
My experience with scleroderma has made me acutely
aware that we all construct narratives for our lives,
narratives that not only help us make sense of our past
and present experiences, but that anticipate how our
lives will play out in the future, as parents, professionals,
spouses. Because they make our lives seem predictable,
these narratives provide a sense of security for us.
One of the most powerful effects of being diagnosed
with scleroderma was to completely undermine my narrative,
my dreams of how the remaining years of my life would
play out. I was heartbroken at the thought that the
future I had imagined with my family and for my career
would not happen, and I was terrified at how unpredictable
and uncontrollable the future suddenly seemed.
Both the diagnosis and the rapid progression of the
disease were traumatic experiences for me. My physical
appearance changed rapidly. Within months I experienced
a loss of independent functioning and found myself needing
assistance with even the most basic tasks. I was unsure
whether I could continue to work as a therapist, supervisor,
and teacher. I was upset by the pain I was causing my
children.
I also felt very isolated. I had a rare disease that
many people had never even heard of, and I felt there
was no one to share the experience with outside of my
family.
Worry Drove My Thoughts Inward
The overwhelming worry about my health, the need to
figure out what I could and could not do, and the need
to adjust to new limits and physical dependence, all
led me to re-direct my emotional energy inward. I became
more self-preoccupied. I lost interest in the “outside”
world, and even to some extent in my friends.
In retrospect, these were signs of depression. Yet
the inward focus was also necessary, as I struggled
to adapt and regain my equilibrium. At the age of 47,
I had to adjust to a more dependent and seemingly diminished
“Shirl,” and to figure out who this Shirl
was and could be.
Adapting and Moving Forward
As I continued to adjust on many fronts, I also began
to think about my life in new ways. Talking with my
husband about my fears and feelings was a critical foundation
in this process. He helped me feel I was not quite so
alone with the disease. I realized I could still have
expectations, relationships, work; I had not lost my
competence as a professional and mother and wife. I
began to build a new narrative, a new story of my own
and my family’s lives. This one was far more flexible,
to accommodate constant and unpredictable health problems
and other uncertainties.
At some point, probably during the past year, I felt
that I could regain control over central parts of my
life; for instance, how I wished to be treated by friends
and colleagues, not as an invalid, but with care and
empathy and respect for the old self that was still
in me.
I decided I could not put my life on hold each time
a new health issue arose, not least because some such
issues could take weeks or months to resolve. I had
to get pleasure and give pleasure, no matter what was
going on.
I realized that the self-preoccupation was adaptive,
in that I focused on how to be as healthy as I could.
I paid closer attention to my diet. I did exercises
suggested by a physical therapist, and I made sure to
walk every day. These were small things, but aside from
their health benefits they helped me regain a modest
feeling of control over my life and my body.
I realized that, while in some ways the scleroderma
caused a complete break from my previous life, in other
ways it was part of life.
I had faced difficulties before, and they had shaped
me as well. I know that I will likely experience many
difficulties in the coming years. I am still scared.
Yet I think I have a bit of a foundation to stand on
again. In the coming year I am going to focus on linking
my professional experience as a therapist to my personal
experience of scleroderma.
We are not alone with this disease. A small group
of incredibly dedicated physicians —including
my own doctor, John Varga—is slowly but steadily
advancing treatment and basic understanding of scleroderma.
I hope we will also begin to pay fuller attention to
its psychological impact. |
