Recently
I presented at a Professional Development day for an Ontario school
board. As I packed up my computer, one attendee whom I had noticed earlier
approached me. Throughout my talk her face had betrayed her dubiousness
in the positive message I was trying to confer, and so I steeled myself
for a debate. Her forceful questions kept returning to the life course
of TS: what were the odds of it going away? WILL it most likely stop?
My increasing suspicions that this all stemmed from more than academic
curiousity were confirmed when this woman abruptly burst into tears.
She admitted that she had a son with TS and desperately wanted it to
be gone so that he could enjoy a good life.
This incident
reminded me of a mother of a TS child I know. Once, when I suggested
that she may have a symptom of disinhibition or two herself (the whole
"apple-not-falling-far-from-the-tree" phenomenon), she impulsively
proclaimed "well how can THAT be! I function just fine!".
Ouch.
Situations
such as these suggest to me that a fundamental confusion of the terms
"symptoms" and "disorder" is taking place. They
are not one and the same, but are often erroneously taken as such. Doing
so inherently fosters further misconceptions - for example, the mistaken
belief that medication is synonymous with treatment or, put another
way, not medicating (suppressing) the symptoms is equivalent to not
treating the disorder. It also leads to such counter-productive things
as denial of symptoms and resistance to labels. After all, to admit
symptoms is therefore tantamount to admitting that you are disordered
and have a problem.
Is this
a generational thing? A carry-over from times past where disorders,
and the symptomatic, were shunned, not discussed, and hidden from society?
Is it a by-product of the medical model, so pervasive in our world today?
M.D.'s have lobbied for years to have the "marked distress or significant
impairment" criterion removed from the diagnosis of TS given that,
from their perspective, simply possessing the correct symptoms at the
right times is sufficient to say the person has a disorder.
I don't
quite have my head wrapped around it all, and I certainly can't speak
for other generations or physicians, but it seems to orbit this idea
of function being linked to symptomatology: my child CAN'T be happy,
CAN'T do what (s)he wants to, my client WILL ipso facto be distressed
and impaired and disordered, if (s)he has these symptoms.
Now hold
the phone here: THAT suddenly sounds familiar. I've lived there myself.
Growing up I denied the irrepressibility of my tics: TODAY I wasn't
going to tic. At this DANCE I wasn't going to tic. I so badly wanted
to stuff all of those symptoms deep down beyond detection because that,
in my head, was synonymous with life being suddenly better. By not ticking
I would now get along with my family. I would now be better at things.
People would like me. GIRLS would like me. i would like me
.
How wrong
I was. In fact nothing could be further from the truth, and this is
one of the greatest lessons I could ever hope to impart. Symptoms don't
make a disorder. People do. This was demonstrated by my Masters study
where I measured the severity of people's symptoms, the degree of disorder
present (through such measures as self-esteem, feelings of control in
one's life, sibling interactions, and behavioural problems) and one's
attitude towards the symptoms. Symptom severity had no relationship
with degree of disorder (i.e. coping success). Attitude, however, had
a great deal to do with degree of disorder. In other words, according
to the results of my study a person with severely pronounced symptoms
would fare better (and be less disordered) if (s)he had the right outlook
towards the symptoms than someone with mild symptoms but a fatalistic
approach.
We don't
have the luxury of choosing whether or not we will have a particular
neurology. Fortunately, though, we have more of a choice in whether
or not we will have a disorder than many might ever believe possible.
Until
next time, my friends!
B. Duncan McKinlay, Ph.D.
