as an Adult
The educational efforts of the Tourette Syndrome Association have succeeded in spreading the word about TS to professionals in a number of health and health-related fields. As a result, more and more people with TS are being diagnosed accurately and are being referred for appropriate services. A consequence of this growing awareness of TS has led to a focus on early diagnosis and preventive measures to meet the needs of people with TS before challenges grow into overwhelming problems. This focus has been on children and their needs for support, special education, behavior management and development of satisfactory coping skills.
More and more, adults with Tourette Syndrome have expressed the need for information about how others deal with the situations of adult life, e.g. the challenge of coping with Tourette Syndrome in the workplace, in family life and in social settings.
There are many facets of day-to-day living that are affected by having Tourette Syndrome. We have received input from adults willing to share their experiences, and the following is an account of several issues adults with tS have raised.
Some adults report that they have proceeded from feelings of helplessness and depression to a greater awareness of their strengths and capabilities and a more positive approach to life's challenges and obstacles. They acknowledge that TS very clearly presents at least some limitations, depending on their particular spectrum of tics and vocalizations, as well as any associated learning or behavior difficulties they experience. Given those limitations, however, they are left with choices.
Adults who have had a diagnosis of TS for some time face a decision about whether or not to inform others about their disorder. Many variations on this particular situation have been reported and although there are benefits and disadvantages, many people value the trust they can develop in relationships by honestly acknowledging the reason for their tics.
Employment is an area in which this question arises not only at the start, but again and again in situations with employers, colleagues, co-workers, clients, customers, supervisors and so on. Some adults express the fear that they might be turned down for a job or let go due to symptoms. Just as everyone needs to assess his or her own strengths, deficits and needs in selecting a field of work, people with TS should consider the degree of their tics and the potential impact of TS on jobs they might like to consider. It is commonly recognized that stress exacerbates [makes worse -ed.] TS symptoms, leading to the need to monitor the experiences of stress, and make choices which are more likely to be tolerable or to include room for positive adjustment and adaptation. Vocational rehabilitation services have begun to offer opportunities for on-the-job support services to enhance "fit" of employees with special needs in work settings.
One of the issues that arises not only in work settings but in social situations and day-to-day interactions is the impact of others' reactions to the person who has TS. Sometimes it can feel as though others see only symptoms and do not recognize the total person. Adults note that they long for acceptance and understanding by spouses, friends, family members, employers, dates, etc. This plea for acceptance is carefully distinguished from merely the tolerance of tics. They are seeking the more fulfilling kind of acceptance that characterizes healthy relationships and includes recognition of strengths as well as difficulties. As in all relationships, each of two people has his own capacity for acceptance and understanding. The adult with TS takes on the responsibility of understanding another and enjoys the opportunity to develop and share positive attributes.
The adult with TS undoubtedly faces a special and often difficult task of coping with the need for acceptance by others who may judge him, leap to mistaken conclusions or withdraw in fear or threat. The challenge is very real and means drawing on sources of strength both from within and and resources without. Judgements, mistaken perceptions and ridicule can take a significant emotional toll. One's value as a person, one's worth and uniqueness should not be minimized by others. Frustration can result from the ongoing need to explain the uncontrollable aspects of TS. Gratification can follow from the development of positive relationships, the effort to be all you can be and the opportunity to share experiences, feelings and thoughts. Adults with TS are not alone in the challenges they face. People have attempted and succeeded in pursuing a wide range of goals, struggling with tics, vocalizations, obsessive-compulsive behaviors, anger and frustration along the way.
Those of us who have TS can attest to the challenges presented and those of us who do not can lend an open ear to try to understand as best we can. Together, we can step forward to build more useful and communicative relationships.
The preceding information was provided by the Tourette Syndrome Association.