Windows of Your Soul

By Nancy Patterson, From ThyroWorld, Volume 1, No. 2, Autumn, 1998

What happens when your eyes, the very "windows of your soul", no longer allow you to see that soul?

Physically, thyroid eye disease is painful and progressive. Irritation, corneal abrasions, photosensitivity, proptosis, excessive tearing, double vision, are the physical symptoms. Mentally, thyroid eye disease interferes with cognitive processes simply due to the mechanical changes. It becomes difficult to impossible to read; errors are made in matters requiring depth perception; overlapping numbers lead to mathematical errors, and many of us have literally run into "the wrong wall"!

For most patients with severe thyroid eye disease, the emotional and psychological challenges can be devastating. The face that has looked back at you in the mirror all your life is changing - for the worse. Friends whom you have not seen for several years may literally not recognize you. For most people, self concept - the way you think about yourself - is based in large part, on physical appearance. As physical appearance changes so drastically, your self image and self esteem decrease to sometimes suicidal levels. Some patients refuse to leave their homes; they have been stared at, ridiculed, or had small children run away screaming and crying. Others wear sunglasses continuously.

The helplessness and hopelessness of a severe case of Graves', complicated with thyroid eye disease can reduce even the strongest, most positive person to one almost incapable of looking in a mirror, much less of looking into one's own soul, or keeping a balanced view of the world.

Since 1971, I have worked in the field of mental health. Counselling, nursing and teaching have been my areas of specialization, with a particular interest in the psychological adaptations and emotional upheavals in the lives of people with chronic, life-changing diseases. For example, the rate of divorce in any chronic illness exceeds the already high sociological level. Sixteen years of educational preparation and training helped me some, but not nearly enough, to deal with the challenges, chaos and changes that were ignited by my own Graves' disease. My eyes were an immediate target of the misguided antibodies that ravaged every cell they could find. My expressive dancing dark brown eyes, and my naturally curly hair were my two favourite features. They were among the first casualties of the chaos of Graves' disease.

Had it not been for my opthalmologist, who was open and honest with me from the beginning, that is, gave me hope, I don't know how much worse things would have been. He assured me that although it was going to be rough, there was something that could be done in the end.

The remainder of my personal journey is that I started an educational foundation to provide information for people dealing with Graves'. My eighteen years of private practice ended along with fourteen years of marriage; I moved to a calmer, more peaceful place in the mountains of North Carolina where I eventually ended up with a schedule more demanding than before.

I have tried to befriend that which I formerly perceived as my enemy, to create something positive from this demoralizing illness. Graves' did not choose to be in my life any more than I wished to have it there. I know that there are other windows to my soul.

Dr. Nancy Patterson is the Founder and President of the National Graves' Disease Foundation. http://www.ngdf.org.