I'm excited to present the latest participant of my Spotlight Series and officially expand the scope of this project past physical illnesses and/or disabilities. Meet the incredible Megan Smith! Megan and I met at Colby College where we had many common friends. Although we never spent much time one on one, Ialways enjoyed her presence and never heard anything but awesome things about her.
Megan lives with Tourette's Syndrome (TS), a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette's syndrome is defined by multiple motor tics (kicking, stamping, jumping, touching, etc.) and/or vocal tics (grunting, throat clearing, shouting, etc.) lasting for more than one year. According to the Tourette Syndrome Association (TSA), "symptoms of TS vary from person to person and range from very mild to severe, but the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities...most people with TS and other tic disorders will lead productive lives...there are no barriers to achievement in their personal and professional lives."
Megan is a prime example of how those living with this syndrome can excel in their lives and achieve anything they want. I know her story will inspire you.
What is the year you were first diagnosed? How old were you ?
I was first diagnosed in 2003 when I was 17, although I've had noticeable symptoms since I was 4.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
Tourette syndrome is not a death sentence. Yes, it is most likely a chronic condition that you will deal with for the rest of your life in some capacity (although your symptoms may decrease or abate in early adulthood), but you can get through it. Learning to cope with the tics, as opposed to fighting them, is often a much easier way to deal with the symptoms. Be creative - get regular massages to soothe the physical pain from the tics, avoid loud, crowded spaces when you are tired if you know that it will exacerbate your tics, etc. Self-consciousness is one of the hardest things to cope with - practice explaining to people about your tics - it will boost your confidence and help get rid of that "elephant in the room" feeling. Also, don't lower your standards just because you have Tourette's - you are just as mentally and intellectually capable as anyone!
Please explain how your condition affects you.
The main symptoms of Tourette syndrome are motor and vocal tics. Motor tics are movements and can range from simple eye blinking to more complex patterns of movement (e.g. jerk head, throw arm out to side, and then snap fingers). Vocal tics are sounds and they can range from simple throat clearing and coughing to repeating words and phrases. Coprolalia (rude or obscene words), the symptom that everyone associates with Tourette's, is only present in about 10% of the Tourette population.
For me, the hardest thing to cope with besides the self-consciousness and occasional shame, is the pain and fatigue associated with my tics. I tic almost every minute of every day. Many times, I am good at camouflaging my tics. For example, I cough when I have the urge to say a phrase or word. When walking, if I feel the need to squat, I pretend I am tying my shoe. Some tics are hard to hide, and those are usually the most painful. Head jerking, loud grunting, and arm flinging are especially difficult.
Because of this almost constant movement, I fatigue much quicker than other people. By five o'clock I am usually exhausted and need to lie down for an hour, so that I am able to get through dinner and whatever else I have planned for the evening. It took me a while to realize that I couldn't keep going all day like a "normal" person, which was a hard pill to swallow at first, because everyone with Tourette's wants to feel as "normal" as possible. College was hard at times, because when people were just gearing up for the weekend, I was looking forward to the weekend so that I could sleep and prepare for another week. I was always physically exhausted by Friday! In addition to the fatigue, there is pain associated with some of my more intense tics. To compensate, I take pain medication and get regular massages. I also take medication specifically for the tics when they are really bad (there is no actual medication for Tourette's - doctors have to experiment with medications for other neurological/pyschiatric disorders, including epilepsy, Parkinson's, and psychotic disorder (no-I'm not psychotic ;-) Unfortunately, these medications make me tired and I hate taking them as they put me "out" for a day or two.
The disease has changed with time. When I was younger, the tics were mainly motor. I had few vocalizations and more motor tics - head jerking, squatting, snapping, eye blinking. As I have gotten older, my motor tics have become less apparent (abdominal tensing, neck stretching) and my vocal tics have increased. I have learned to cope with it and have come to realize that I will always need to make special accommodations so that I can be the most successful person that I can be. This fact, however, does not diminish my value as a person and I should not feel ashamed that I need to make such accommodations.
What are 3 things you couldn't live without?
I could never live without my animals. They are a calming influence and do not judge me based on my odd movements or behaviors. Having dogs also forces me to get out and exercise, which is really important for people with tics.
I could never live without my parents in my life. They are the reason that I have done so well. I continue to live with them at home and they are a stabilizing force in my life. Although I plan to move out in a year, I know that they will always be supportive. I believe that because my parents, and mother in particular, never let me use my tics as an excuse, I have come so far. They always focused on solving the immediate problem at hand and never allowed me to wallow in self-pity or ask "why me?"
I also couldn't live without the opportunity to travel. It is a passion of mine and I savor being able to experience a different language and culture.
What are you most proud of?
I am most proud of the fact that I never let Tourette's stand in my way of accomplishing what I wanted to accomplish. All too often I see people who cannot seem to get past the fact that they have this chronic, embarrassing, and at times, debilitating disorder. Maintaining a positive attitude and refusing to let Tourette's be the reason for not pursing a passion is essential. I am proud that I got through college and am now on track to attend medical school.
Where do you get your strength?
My family, friends, co-workers, and pets!
If you could send one message to medical professionals around the world, what would it be?
Think about your treatment plan for people with Tourette's - medication can make a difference, but don't just medicate because it is the easiest way to help tics. Emphasize the importance of maintaining a normal life, pursing hobbies, meeting people, forming relationships, and having fun!
Megan, I want to thank you for opening your heart up to us! You've given an amazing voice to an often misunderstood condition and you are truly remarkable.
I want to end this post by telling you all about an incredible documentary I saw in class the other day: HBO's Have Tourette's, But Tourette's Doesn't Have Me. Below, you can see a preview and learn about these incredible kids. I really recommend renting and viewing the entire thing - it brought me to tears and gave me a much greater understanding of the condition.
I'm living in New York, studying social work, and making time to be Maya: a daughter, a sister, a fiance, a friend, a writer, an animal lover and someone coping with 2 medical conditions (Spondylitis & Fibromyalgia). Every day I'm learning to live and love not despite chronic illness, but because of it. I treasure my readers, so please comment or write to me at firstname.lastname@example.org. Thanks for stopping by!