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Life time eczemaI speak as a 39 year old woman who has lived with severe full-body atopic eczema, and related atopic conditions, since birth. From the entangled twine of memory, I unravel a thin thread to present an incident from my childhood, with hope that it contributes to greater understanding between doctors and patients. I applaud the open eyes and ears of those in the medical community interested in the perspectives of those with chronic illness. I may be an unusual case, however, I believe my story offers something instructive about faith, care, and ethics. As a member of an international group of eczema patients communicating via the Internet, I recently saw a posted message saying, (I'm paraphrasing here) "We've had to devise ways of keeping our son from scratching. We call him Houdini because of his ability to get his hands free. A sense of humor is certainly necessary with this condition, isn't it?" Reading this brought shocked tears, not laughter. As a child I too was put into restraints in vain attempts to prevent me from scratching. Tragically, 30 years later, apparently nothing has changed for children suffering with this disease. When the use of restraints began, I was 8 or 9 years old. The year before, I'd had an operation for removal of a benign cyst on my leg, and I'd developed a staph infection. At the time of the following incident, I was in the hospital for an operation to remove another tumor that had appeared on my left clavicle, so close to the bone that I nearly developed osteomyelitis. My left arm was affected and in pain. Consequently it was bound in a sling to prevent movement. My right arm was also incapacitated, held straight out and hooked up to an IV. It was an awkward position to be held 24 hours a day, and extremely frustrating to be left without the use of my hands, as well as being confined to bed and restricted in all physical movement. I was in that position for nearly a week. This situation would be uncomfortable enough for any child. However, what must be understood is the context of chronic illness in which it occurred. The use of my hands figured prominently in my eczema. I was accustomed to scratching constantly, so not being able to do so at all was a severe mental and emotional struggle. Before entering the hospital for this operation, I had been learning to gain control of my hands. I had recently figured out a self-hypnotic pattern of repetitively touching my fingertips together, and had had some success tucking my hands under my buttocks as a calming mechanism. I was beginning to hold a handkerchief and other objects to keep my fingers occupied, as well as starting to slap, pinch, or stroke the skin comfortingly without using my nails. But I was in the early stages of this control, and frequently relapsed into scratching. |
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