“With This Tremor I Just Can’t Face People”

“Over the last 25 years, there has been a gradual acknowledgment that essential tremor (ET) is comprised of much more than a benign rhythmic oscillation of a limb.”i

ET is indeed a much bigger problem than “the shakes,” as many people refer to it. Not only can it progress from barely noticeable trembling to an uncontrollable disability, it can devastate a person’s self-confidence and self-image. In turn, this can cause what is known as social anxiety.

According to the Social Anxiety Association, “Social anxiety is the fear of social situations that involve interaction with other people. You could say social anxiety is the fear and anxiety of being negatively judged and evaluated by other people. It is a pervasive disorder and causes anxiety and fear in most all areas of a person’s life.” ET has such a powerful effect that even individuals who are otherwise outgoing “people persons” become reluctant to expose themselves to the possibility of stares, misunderstandings, misinterpretations, and even ridicule – which those who have had ET since childhood often report from their school days.

Social anxiety: a non-motor symptom

In the not-so-distant past, ET was called “benign essential tremor.” The word benign suggests that there’s no real physical harm in the condition, like the difference between a benign tumor that won’t really harm you vs. a terminal cancer. Today, we know that there’s nothing benign about ET because it creates plenty of physical, cognitive, emotional and psychological harm.

The most obvious symptom of ET is an involuntary tremor associated with intentional movement. Since tremor is a muscle movement, it is called a motor (movement) symptom. Tremors can affect the hand, head, voice or other part of the body. ET tremors may not occur at all, or only slightly, when the body part is at rest; this sets ET apart from Parkinson’s disease, when tremors may happen even at rest.

However, the presence of tremors draws attention to a person with ET in a way that causes social discomfort. Even when taking Primidone or Propranolol to manage tremors, “…large numbers of patients with ET reported significant embarrassment and diminished quality of life in the psychosocial domain…ET patients report far more than “embarrassment” which can too easily be trivialized by health care providers and others.”ii Thus, embarrassment is a non-motor symptom linked with ET.

We all have occasional embarrassing moments, but for those with ET, it can be a daily reality. Plus, embarrassment is just one aspect of a state that is recognized as a disabling condition called Social Anxiety Disorder (SAD). SAD has three key components:

  • Emotional distress (feelings of fear, anxiety, embarrassment)
  • Cognitive distress (mentally anticipating public helplessness or being humiliated)
  • Behavioral changes (avoidance, escapism or isolation)

People with ET whose lives become complicated with SAD find social situations, even happy parties or get-togethers, stressful. Stress can worsen the degree of tremors. Added to that, their social anxiety can worsen if some type of performance is also required. For example, having to be “on” for a job interview can be excruciating. How many times has a well-qualified job candidate with ET not been hired due to the perception that they are nervous, self-conscious, and inept?

New conclusions about ET and social anxiety

Social anxiety exists as a spectrum from feeling ill-at-ease over the idea of being with others, all the way to SAD. We recognize that ET is probably a family of dysfunctions with multiple brain sources and pathways that manifest as tremors. While progress is being made analyzing the physical phenomena, as need a better understanding of the inner emotional, cognitive and behavioral world of those who must cope with ET. Social anxiety may not be completely tied to how severe the tremor is, but rather a) how the much the person sees himself or herself as “disabled,” b) what their innate and learned coping methods are, and c) how effective their treatment is. The results of one study suggest that many persons with ET actually underestimate how socially distressing their condition is, but at present, there is no questionnaire or other instrument specifically designed to evaluate social anxiety in conjunction with ET.

Effective treatment is a social game-changer

ET is not a single, universal state of neurological dysfunction. It is thought that this is why a medication that helps one person is next to useless for another. Even if medication initially helps, it is extremely frustrating and demoralizing to periodically increase doses if tremors worsen, and it can be maddening to live with medication side effects. Fortunately, a new outpatient brain intervention called MRI-guided Focused Ultrasound (MRgFUS) can control tremors in the dominant hand and stop the medication merry-go-round. Focused Ultrasound is an FDA-approved noninvasive treatment that uses over 1,000 “beams” of ultrasound to stop abnormal signals in the brain from reaching the hand.

People who had practically imprisoned themselves in their own homes due to fear of social embarrassment and more are able to reclaim a full social life after a single treatment. MRgFUS ends the anguish of social anxiety. Watch patient testimonials to learn more about this social game-changer.

iLundervold DA, Ament PA, Holt P. “Social Anxiety, Tremor Severity, and Tremor Disability: A Search for Clinically Relevant Measures,” Psychiatry Journal, vol. 2013, Article ID 257459, 2013. https://doi.org/10.1155/2013/257459.
iiIbid.

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