The article deals with the appearance of scleroderma that receives too little attention and that is its psychological impact on the affected person and his family.

I am a psychotherapist of 48 years that two years ago was diagnosed with diffuse systemic sclerosis. It took me some time to get through my reactions and feelings, to begin to adapt to change in my inner being and my life and find some 'sense of balance.

Shirl Tarko-Halpern

The story of my life has changed

My experience with scleroderma has made me aware that all of us construct the story of our lives, stories that not only help us make sense of our past and present experiences, but anticipate how our lives will take place in the future as parents, professionals, spouses. These stories give us a sense of security because they make our lives predictable.

One of the worst effects of the diagnosis of scleroderma was to completely undermine my story, my dreams were to take place on how the remaining years of my life. I was desperate at the thought that I had imagined the future with my family and my career would not have made and I was terrified of what the future suddenly seemed unpredictable and uncontrollable.

Both the diagnosis and the rapid progression of the disease were traumatic experiences. My physical appearance has changed rapidly. In a few months I lost the minimum functionality guaranteed independence and I found myself in need of assistance for most basic tasks. I did not know if I could continue working as a therapist, supervisor and teacher. I was angry for the pain I was causing my children.

I also felt very isolated. I have a rare disease that most people have never even heard of, and I felt I did not have anyone outside of my family, to share the experience.

The concern I have closed myself

The overwhelming concern for my health, the need to understand what could and could not do, the need to adapt to the new limits and physical dependence, led me to direct my energies toward my emotional inner being. I became more anxious. I lost interest in the "outside world", and also to some extent for my friends.

In retrospect these were signs of depression. Yet the attention to my inner being was also necessary, as I struggled to adapt and regain my balance. At the age of 47 years, I had to adapt to a more dependent and apparently diminished Shirl and figure out who this was Shirl and who would still have been.

Adapting and moving forward

As I continued to adapt on many fronts, I also started thinking about my life in a new way. Talking with my husband about my fears and feelings is the essential basis for this process. He helped me to feel that I was not so alone with the disease. I figured I could still have expectations, relationships, work, I had lost my competence as a professional, mother and wife. I began building a new story, a new story of my life and that of my family. The family was much more flexible to constantly adapt to constant and unpredictable health problems and other uncertainties.

At some point, probably during the past year, I felt that I could regain control of the central part of my life, for example, I wanted to be treated by friends and colleagues, not as an 'invalid, but with care, empathy and respect for the old personality which was still in me.

I decided that I could not put my life on hold every time there was a new health problem, because some problems could take weeks or months to resolve. I had to continue to live and transmit vitality, regardless of what was happening.

I realized that the worry about myself has been adapted in the sense that I have focused on how I could be as healthy as possible. I paid more attention to my diet. I did the exercises by a physiotherapist, and I made sure to walk every day. These were small things, but apart from the health benefits, helped me to regain a small sense of control over my life and my body.

I realized that, while in one sense, the scleroderma caused a complete break with my past life, was another part of life.

Before this experience I had some problems that I had been forged. I know that I will encounter many difficulties in coming years. I'm still scared. Yet I think I have some more 'solid foundation to stand. Next year I'm going to focus on the connection between my professional experience as a therapist and my personal experience of scleroderma.

We are not left alone with this disease. A small group of doctors, including my family doctor John Varga, are slowly but constantly studying to understand the causes of scleroderma and drug treatment. I hope that you also begin to pay close attention to its psychological impact.

Source:

Scleroderma Voice, 2003, number 2

http://www.scleroderma.org/medical/coping_articles/halpern_2003_2.shtm ;