Understanding Scleroderma Sufferers
To provide meaningful support to victims of scleroderma (SD), better understanding of them is needed. Because the disease is frequently misdiagnosed, a victim of SD may go for years without knowing the true nature of his or her illness. In the early stages, he may be subjected to a demanding diagnostic process. If a diagnosis is not forthcoming, he may feel powerless, isolated, and frightened, knowing that changes are occurring in his body that cannot be explained.
Sufferers often face losses, limitations, and changes on a number of levels. If physical limitations make it necessary for him to depend on others for care and treatment, his independence may be threatened. On a personal level, changes in relationships with loved ones may occur as family roles and responsibilities are transformed. The sufferer may also be unable to spend time with friends or engage in leisure activities. Professionally, it may be necessary for him to change careers or to stop working altogether.
Given these changes, it is not uncommon for the afflicted person to experience feelings of low self-worth. It is important for the sufferer to be aware that such feelings are a natural reaction to the illness.
On the positive side, many SD victims have found that love, joy, and hope have deepened in their lives as family members and others reach out to assist them. Although the victim and his loved ones are faced with difficult challenges, they can choose to maintain hope and a positive attitude. Feelings of hopelessness and frustration are valid, but the sufferer need not surrender to them.
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