Well, I’m not alone and I feel less like a freak and a failure.
(Go look at the pictures if you don’t want to read about me sticking my head up my amygdala.)
After six months of treatment, Dr. Shoja diagnosed me with C-PTSD, citing parental neglect and abuse as the cause. She later amended her diagnosis, saying she believed I had inherited a genetic predisposition to anxiety that, along with the parental neglect, created C-PTSD.
The diagnosis felt vague and I felt angry and confused when I heard people like Lady Gaga say they, too, had PTSD. They were functioning in a way unfathomable to me; Lady Gaga performs in front of massive speakers and crowds. How is that possible if she has PTSD, I wondered?
Yesterday, I got a Stuttering Magazine. I have a subscription. And I thought to myself: I don’t stutter, why am I getting this magazine? The answer is that I did for a while after my breakdown. But now the word that comes to mind all the time is that away from home, I am mute.
So I Googled “mutism” and came upon the term “selective mutism” with a link to Wikipedia. The text below is from Wiki.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), first published in 1952, included “selective mutism” in its third edition, published in 1980. “Selective mutism” describes a person exhibiting "a continuous refusal to speak in almost all social situations" despite having a normal ability to speak.
That is me to a tee—except I’d say “inability” instead of “refusal.” Wiki goes on:
People with selective mutism are fully capable of speech and understanding language, but they are physically unable to speak in certain situations, though speech is expected of them. A person with selective mutism may be completely silent at work for years but speak quite freely or even excessively at home.
There is a hierarchical variation among people with this disorder: some people participate fully in activities and appear social but do not speak, and still others speak to no one and participate in few, if any, activities presented to them.
Selective mutism is strongly associated with other anxiety disorders, particularly social anxiety disorder. In fact, the majority of people diagnosed with selective mutism also have social anxiety disorder (100% of participants in two studies and 97% in another). Some researchers therefore speculate that selective mutism may be an avoidance strategy used by a subgroup of people with social anxiety disorder to reduce their distress in social situations.
Selective mutism is, by definition, characterized by the following:
· Consistent failure to speak in specific social situations (in which there is an expectation for speaking, e.g., at school/work) despite speaking in other situations.
· The disturbance interferes with educational or occupational achievement or with social communication.
· The duration of the disturbance is at least one month.
· The failure to speak is not due to a lack of knowledge of the spoken language required in the social situation.
Besides lack of speech, other common behaviors and characteristics displayed by selectively mute people include:
· Shyness, social anxiety, fear of social embarrassment or social isolation and withdrawal.
· Difficulty maintaining eye contact.
· Tendency to worry more than most people of the same age.
· Sensitivity to noise and crowds.
On the positive side, many people with this condition have:
· Above-average intelligence, perception, or inquisitiveness
· Creativity and a love for art or music
· Empathy and sensitivity to others' thoughts and feelings
· A strong sense of right and wrong.
Given the very high overlap between social anxiety disorder and selective mutism (as high as 100% in some studies), it is possible that social anxiety disorder causes selective mutism.
Most people with selective mutism are hypothesized to have an inherited predisposition to anxiety.
A more accurate description of my circumstances could not be written!
There’s only one thing missing. There is no mention of the behavior I call “anxiety attacks” that are brief and characterized by a sudden involuntary tensing of my entire muscular system that includes hyperventilation.
When Dr. Shoja casually referenced PTSD as being an anxiety disorder. The word “anxiety” immediately resonated with me. It was a revelatory moment; an epiphany for me.
Having a clear meaningful diagnosis that makes sense is what everyone whose life is disrupted by illness wants. The diagnosis of “C-PTSD” has never satisfied me. Never. The terms “selective mutism” (SM) and “social anxiety disorder,” (SAD) however, perfectly describe my behavior and therefore mean a great deal to me.
Having PTSD involves cause and effect. When I use the term, people wonder what happened. What trauma caused my symptoms? And thinking of myself as having PTSD made me feel weak or like a failure because I know that there are people who have suffered worse things than I, but who do better than me at living a normal life.
SM and SAD are organic/genetic mental illnesses. Were these illnesses my diagnosis, I could believe I was born this way and feel less of a failure.
I may talk this through with Dr. Shoja.