ADAPTING to and MANAGING SPASMODIC DYSPHONIA

by Dale Finn, MSN, RN, CS, Psychiatric/Mental Health Clinical Nurse Specialist
Dale Finn currently serves the NSDA as Area Contact Person for South Carolina

Special thanks to Mary Bifaro for publishing this in the Charlotte SD Support Group Newsletter

Living with a chronic condition such as SD involves an ongoing, ever-changing process of trying to make sense of how to live with a “new voice”. To do this effectively, it requires us to find a balance between focusing on our symptoms and recovering our pre-SD identity.

SD affects our self-esteem. Our voices sound different. We sometimes are unable to get any recognizable words out. We stop and sometimes stutter while attempting to push words through spasming vocal folds. It is a struggle to talk, so often we don’t. Frequently people treat us differently and worse yet, we perceive ourselves to be different. We struggle between our self-identity (the person we know we are) and the identity that is shaped by our voices (the identity given to us by others and accepted by us, in response to our voice).

Living with any chronic illness or condition comes down to one statement: we either assume control or we will be controlled.

Before we can gain control, we need to come to terms with our diagnosis. Whether it has taken years of searching for a diagnosis to our voice problems or we have received the diagnosis within a few months of our first symptoms, we must all process the news and try to make sense of it. First, it is helpful to look at how we have coped with life adjustments in the past. This is often a good predictor of how we will cope with this diagnosis. Next, coming to terms with the diagnosis means dealing with the feelings of loss and grief. We have lost a very important part of our everyday functioning. Feelings of denial, anger, bargaining, depression, sadness, and acceptance are all necessary to acknowledge and deal with.

Another helpful way of taking control of the diagnosis of SD is to gain all the knowledge we can about the disorder and become the expert. Then we need to share this knowledge and our personal experience of living with SD with health care providers, family and friends. Once we have gained all the information we can, from as many sources as possible, we then decide on the best treatment. This is a very individualized decision. There are several treatment options for SD, and no one treatment fits all. In making our choices, we must believe in ourselves and feel confident that the decisions are those that we can live with.

Adaptation requires us to balance living our lives without being absorbed with our symptoms. SD does not define who we are, it is only a portion of our identity. We need to lessen the effects that it has over our lives. We may need to change aspects of our life to accommodate our voices, but these changes may also bring rewards we never expected. SD needs to be placed in the distance when viewing oneself. The balance comes when we attend to our voice disorder while focusing on all the other components that make up who we are and how we contribute to the world around us.