Mirror of the Soul

From ThyroWorld Volume 1 No 2

by: Sally Mitchell

Coming to terms personally with a disfigurement in whatever shape or form it may manifest itself is extremely hard to accept. We all love what is beautiful, we relate to what is beautiful, we feel comfortable with what is beautiful, and the mirror on the wall confirms that we are beautiful. To be beautiful is to be totally accepted within society, without question. But to be deformed/disfigured is quite another thing. I know, because I developed thyroid eye disease which not only disfigures the eyes but also changes the appearance of the whole face.

Thyroid eye disease is a difficult condition to diagnose. The availability of expertise is patchy in the UK and worldwide, so it is no wonder that, in some instances within the medical profession, there is poor understanding and the condition is not easily recognised. This lack of comprehension and awareness does lead to psychological trauma and distress not only because one feels so unwell but also because the disfigurement is hard to handle. Marriages, families, relationships are put under extreme stress and strain. Many such relationships do not survive this illness, suffering is great, some patients are psychologically damaged for life, many lose their jobs never to work again - utter demoralisation.

I started the TED Association as I was hurting. Not only did I need help but I also wanted to give help to all those who needed support, information and care, giving them hope, encouragement and love. Last year, a Consultant Ophthalmologist and I put together a psychological questionnaire for our members, to raise the profile of the difficulty people were having coping with this part of the illness. The response was amazing: 90% replied all telling such agonising stories that I wept many times on reading them. I am grateful to all those who had the courage to complete the questionnaire; it cannot have been easy for any of them. The last question was: "What aspect of the disease is the most difficult to live with?" Here are some of the replies.

"The appearance. I feel generally depressed and don't cope with life as well as I did. I have a feeling which is hard to shake off, of life being marred by the disease. It is isolating."

"Coming to terms with, as I see it, an ugly appearance. Constantly wishing to look as I did before."

"Over-sensitive to comments from family, friends and colleagues."

"To become unable to maintain eye contact and feel so unattractive has been dreadful. Feeling as if the person in the mirror is not me, and that my facial expression has nothing to do with how I am feeling or what I want to communicate."

"My eye consultant would never discuss the psychological effects of the disease with me."

"The fact that you change physically and psychologically makes you become a totally different person. It is very difficult to live with the new person because she has different `limits' and needs."

"This sickness is treacherous. It makes you critical of yourself and you think that everything you do is wrong. You lose your self esteem."

"It is so depressing at least if you break a leg, you get sympathy but if you are disfigured, you get ridicule."

"I used to be able to laugh with my eyes, now I stare. The torture of grittiness, the aching, the taping ritual at night (very romantic), the mental, physical and spiritual changes are too numerous to choose one. Coming to terms with a permanent change in "the windows of my soul"."

In my own case, when the disease was at its most active stage, my son told me that he could hardly bear to look at me it upset him so much. I was grateful for his honesty; here was someone who had the courage to say how he felt. Now I could talk to him about this wretched disease and assure him that in time when the condition burnt itself out, lots could be done to help me look better. In the meantime he would just have to get used to the way I looked. I had not changed, the person I was had not changed, only my outward appearance, the cardboard cut-out. My soul was very much intact.

All we ask of everyone is that we are treated with compassion, consideration and understanding, of the medical experts that we are offered help and information to improve our damaged appearance, thus giving us a better quality of life. The beast that we feel ourselves to be can become the beauty again.

Sally Mitchell is the Founder and President
of the Thyroid Eye Disease (TED) Association:UK.

Copyright © 1998 TED Thyroid Eye disease Association