Oh What A Tangled (Neural) Web We Weave: A first-person account of Tourette Syndrome (part 7, medical overload)



EDITOR’S NOTE: This multipart series first appeared in the March 2010 edition of the Journal of Clinical Psychology Practice and also can be found on Life’s A Twitch, a website run by Canadian psychologist Dr. B. Duncan McKinlay.

The wretched private depths I inhabited for many years as a patient with TS, OCD and ADHD go far beyond any diagnostic criteria. Symptoms are a moving target: having gotten used to one tic another more bothersome one takes its place — likely because the very act of becoming accustomed means one’s attention is no longer priming that tic as readily.

Symptoms sometimes wane long enough to see what a “normal” life would have been like, and how the world would interact with me differently. Then the mirage ends, also baffling, disappointing or infuriating those who based their expectations of me on a ‘good’ day.

There are many costs involved (time, effort, emotion and money): not just in the treatment of tics but also the comorbid conditions. I have rituals to prevent, Concerta to buy and structures to implement and adhere to. Associated medical costs accumulate (e.g. chiropractic care for tic-induced subluxations) as do the costs of replacing objects, people or electronic data not able to withstand tics, impulsive decisions or explosive reactions.

Sleep deprivation and painful symptoms exacerbate an already trying situation, and social costs attached to all this inner warfare are high. Even social cues I’m not too consumed to catch can be misleading, as the interactions modelled are of the type reserved for those who are different.

Even Herculean investment goes only so far, and does not “buy” me any right to retort to reactions. People won’t always understand, I will often be judged or treated unfairly, and because most reactions are borne of being caught off guard rather than maliciousness I do have an obligation to be the bigger person and muster understanding and patience despite this particular salt in the wound.

Ironically, it is at those times when I’m simply too drained of resources to engage in camouflage, symptom modifications, competing responses or explanations that the most resources are needed – to field inquiries, disrespectful treatment and misperceptions. I can never blend into a crowd, so real-world expectations, unintentionally paradoxical as they may be, still demand I be at my best at all times. Especially when I’m at my worst.

Vital bonding experiences at an early age are skewed or missed altogether: a source of isolation and mourning. Dating requires constant explanations and introduces to your partner heightened trepidations (e.g. first impressions, loss of public anonymity, genetics).

Existential questions regarding personal accountability abound: is my inability to remember people’s names due to a personal shortcoming or one of my disorders? I am not enlightened with any special knowledge I keep secret from others, yet I must somehow balance healthy acceptance with healthy growth. Or what about that time I wasn’t chosen valedictorian: Was that prejudice or was I simply not the best candidate?

Who would ever admit the former? Well-intentioned normalizing comments only leave me feeling minimized: if everybody truly does feel the same way, why am I having so many more difficulties? Ask a person on the street to define normality and they’ll tell you it can’t be done. Ask that same person to point at who isn’t normal and their finger won’t take long to find me.

Oh, and somewhere in there I lead a clinic, interact with peers, nourish a relationship, manage unexpected changes and transitions, negotiate compromises, consider the needs of others, and a whole host of other expected tasks. Or at least I try to. Anyone’s mental workbench is only so big, but mine has extra demands sprawled across a goodly portion of it.

Something’s gotta give. Usually it’s friendships, intimate relationships, and my happiness as my intense efforts to do it all fall short and social awareness suffers. There is a daily strain but there is also a more macro drain, one that builds over a period of months and can lead to a crash requiring weeks to recover from.

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