In her own words: living with Tourette syndrome

Joanne, a 40-year-old Bostonian, is a licensed independent clinical social worker (LICSW) with a private practice. She specializes in Tourette syndrome and associated conditions, and provides trainings and lectures at schools and agencies. She also has a small photography business, and enjoys solo traveling, nature, and wildlife photography. These activities help keep Tourette in perspective, and are healthy and necessary coping mechanisms.

What was your first sign that something was wrong? What symptoms did you experience?

My first symptoms appeared when I was nine. My first tic was eye-blinking–a very typical first motor tic for many children. That soon changed (as tics do) to sniffing, head turning, and shoulder shrugging. Each tic would last a few weeks, and then a new one would appear. Often one tic would be replaced by another. After a few months, I began to have vocal tics–a small “uh” sound, then throat clearing, small grunting noises, and other involuntary vocal sounds.

What was the diagnosis experience like?

In the 1970s, Tourette syndrome was not widely recognized or understood, and was often misdiagnosed or undiagnosed. Three different pediatricians told my parents that I had childhood tics and that they would go away. Aware that something was not right, my parents took me to a psychiatrist, who insisted that with intense long-term psychoanalysis three times a week he could help me.

In 1974, at age 13, I was fortunate enough to meet the late Dr. Donald Cohen, at theYaleChildStudyCenterinNew Haven,Connecticut. Within half an hour, Dr. Cohen correctly diagnosed me with Tourette syndrome. My life changed that day.

What was your initial and then longer-term reaction to the diagnosis?

I think more important was my parents’ reaction to my diagnosis. After four years of not knowing why their bright child was making strange movements and sounds, the diagnosis provided relief and a way to begin to understand Tourette syndrome. Most importantly, it offered hope for proper treatment, and one day, a cure. I remember being scared but also relieved that there was a medical reason I did all those “weird things.” As a clinician, I now have the opportunity to help families who are in similar situations.

How do you manage Tourette syndrome?

I manage Tourette syndrome by not letting Tourette manage me. Humor plays a key role in coping with it. Humor not only helps me keep my attitude positive, but also shows the world that not only can I live with this often misunderstood and socially unacceptable condition, but I can live well with it.

I do take several medications, often heavy-duty drugs with side effects such as weight gain and drowsiness. I’ve learned that exercise, stress reduction, and relaxation techniques, vitamins, yoga, and meditation help tremendously. I also get regular deep muscle massage and see a chiropractor. My solo adventures and strong family connections, as well as regular contact with friends and the Tourette community, help keep my life whole.

Have you made any lifestyle or dietary changes in response to Tourette syndrome?

Yes. Recognizing the activities that can help or worsen my tics, mood, and levels of functioning is crucial. As for foods, I avoid caffeine, sugar, artificial flavors, colorings, and other ingredients as much as possible. If I eat red jello, within minutes my tics will be out of control! Forget a double cappuccino!! I do indulge in chocolate, which can increase my tics but also makes me feel better because chocolate increases serotonin, which makes people feel good.

As for lifestyle, I plan my schedule based on my insight into “what makes me tic” and what works best for me. I know that rushing can increase anxiety and thus tics, so I try to recognize that I often need extra time, especially in the morning. Since Tourette syndrome can be mentally and physically exhausting, I’ve learned to balance my activities and responsibilities in a way that I can be successful. Not accepting my limitations or honoring the ways I need to cope only leads to frustration and often an increase in symptoms.

I frequently need to do things a little differently than others in order to accommodate Tourette syndrome. For instance, if I know that I will be more comfortable in a certain restaurant, or at a certain table, I let my friends and family know. Often the smallest detail can make a huge difference. Living in a body that can have “a mind of it’s own” and to look and feel so different from the rest of society can be excruciating. On the other hand, people tell me how strong I am, how amazingly I cope, and how resilient I am. I think it is Tourette that has made me strong, given me the ability to cope with life’s challenges, and ultimately, led me to become a social worker.

Did you seek any type of emotional support?

Over the years I have sought out counseling at various times. As a psychotherapist myself I am biased that counseling and support is very important for children, families, and adults who are living with Tourette syndrome. My emotional support comes mainly from my loving and supportive family, close friends, and colleagues.

Does Tourette syndrome have any impact on your family?

I think there are two sides to this. My family is naturally concerned for my well-being and sad that I have to live with Tourette, which at times has limited me and caused problems in education, employment, and social situations. They sometimes find it difficult to accept my symptoms, especially in public. On the other hand, they are proud of my accomplishments, and happy that I have used my experiences with Tourette syndrome to overcome many obstacles and to help others.

What advice would you give to anyone living with Tourette syndrome?

My advice to parents of children with Tourette or to adults with Tourette is simple: Focus on your strengths, and let your uniqueness shine. You can do anything you want to. In today’s world there is no reason for Tourette syndrome to limit who you are, or who you will become. Learn to understand and accept yourself, and teach that to others.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.


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