Psychoanalyst Frieda Fromm-Reichman once said the greatest suffering in our world is that of alienation.
From “Do I Make You Uncomfortable” by Rick Chillot
As humans, we don’t like to be viewed as different when we’re not choosing to be different. This is keenly felt by a person with an obvious disability or disfigurement who is out in public. Other people, noting the condition, often respond with their own discomfort that shows up in any number of ways: staring (or the opposite, looking away and trying to ignore), looks of pity, remarks that reveal ignorant assumptions or prejudices, etc. In turn, their awkwardness is a reminder to the disabled person of being separate, isolated, alienated. On top of the strategic problems connected with disability, there is this exhausting pain of being a constantly misunderstood “other.”
Lack of public awareness about ET
If a person is one of the estimated 7 million Americans who has essential tremor (ET), he or she is not alone. However, with so little public awareness about ET, feeling lonely seems inevitable. It seems unfair when compared with widespread knowledge about Parkinson’s disease (PD), which affects around 1 million Americans. In terms of dollars, far more public/private research funding goes toward PD than ET.
For those with ET, social anxiety can be a daily reality due to lack of education about this movement disorder. A 2016 paper out of Yale Universityi—perhaps the first published study on ET public awareness, knowledge, and attitudes—provides the beginning of measuring the problem.
The authors devised and tested a questionnaire to gauge participants’ familiarity with ET. They recruited 250 adults to participate, and divided them into 3 groups according to likelihood of ET knowledge:
- 100 patients at a vascular disease (blood vessel) clinic and those who accompanied them
- 100 patients at a general neurology clinic and those who accompanied them
- 50 patients with PD at a movement disorder clinic (no accompanists)
After screening out those who had a prior diagnosis of ET or other tremor, 237 participants were included. The questionnaire was administered in a 10-minute in-person interview.
Each person was asked, “Have you ever heard of or read about a disease called ‘essential tremor’?” If they said no, they were given alternate terms with which they might be familiar: “sometimes also known as ‘benign tremor,’ ‘kinetic tremor,’ or ‘familial tremor’”. The additional terms increased the number of positive respondents to 99 who went on to complete the questionnaire (questions about the extent of their correct knowledge about ET). However, the 138 (58%) who did not finish the questionnaire because they had no familiarity with ET may, sadly, be a representative sample of the rest of us.
What the numbers show
This study demonstrated that lack of knowledge about ET is common. The authors wrote that when presented with the term essential tremor, “…only 10–15% of people surveyed had ever heard of or read about ET. In other words, 85–90% had not heard of ET. Even among patients with PD, a related tremor disorder, only 32.7% had ever heard of or read about ET.”
Even when presented with alternative terms, the familiarity rose but the percentages were still low. About 40% of respondents without PD and 51% or those with PD recognized the condition when they heard the other terms. For comparison, the authors point out that “surveys of epilepsy indicate that more than 90% of respondents are aware of that condition.”
Need for better awareness and information
Broad misunderstanding of a prevalent clinical condition is harmful to patients, whose self-confidence, self-esteem and need for community are badly shaken. The sense of “set apartness” deepens feelings of isolation and alienation, adding to the depressing and frustrating challenges of things like drinking from a cup or signing one’s name. The authors admit that with a small sample size, it’s hard to generalize their findings, but all we have to do is visit online ET support groups and discussion forums to find ample evidence that people with ET experience loneliness and social anxiety. While communication with their peers is supportive, more is needed by way of raising consciousness. The authors write,
Given the lack of public knowledge of ET, one should consider possible interventions for increasing the level of awareness toward ET. Patient-centered foundations already do an excellent job of supporting patient needs and increasing awareness through educational activities; an increase in such activities would be beneficial. Second, a highly visible public spokesperson with ET could also increase awareness more broadly.
We at Sperling Neurosurgery Associates agree wholeheartedly, especially when our ET patients who were treated with MRI-guided Focused Ultrasound tell us incredible tales of “plugging back in” with their social lives. Tearing down walls of separateness is just as restorative as regaining the ability to once again write one’s own signature. Better public awareness is a giant step toward ending alienation.
iShalaby S, Indes J, Keung B, Gottschalk C et al. Public knowledge and attitude toward essential tremor: a questionnaire study. Front. Neurol., 22 April 2016. https://www.frontiersin.org/articles/10.3389/fneur.2016.00060/full