Essential tremor, the most common movement disorder, is a disturbing condition. No one knows what causes ET, though about half of cases appear to run in the family. There is no known cure. It can start at any age, but most often arises in midlife or later. Most people with ET are affected in the hands, head or voice but other parts of the body—even internal—can also be subject to the involuntary “shaking” or rhythmic movements that characterize intentional movement such as reaching or lifting.
ET brings physical problems. Early, mild trembling may be hardly noticeable and not interfere with normal life activities. However, ET is progressive, meaning it can become more severe and gradually involve other areas of the body. Hand tremors can worsen to the point where eating and drinking are very hard to manage. For men, shaving can be a challenge; for women, applying makeup practically impossible. Typing, handling money, brushing a daughter’s hair—things that are taken for granted by those with steady hands—may require the assistance of another person.
Another problem is the social isolation that seeps into a person’s life as those with ET become less willing to be seen in public. It’s embarrassing to be stared at, bringing with it fear of being judged. ET also robs many people of the ability to perform on the job, leading to potential financial woes and a loss of sense of purpose or meaning.
Most of us like to believe that we are able to meet problems head on, and we use problem-solving skills that we develop and refine over years of experience. It feels like a victory when the issue is resolved and the business of life can go on. However, ET brings a daily barrage of small and large problems that defy solution. Medications may not work and assistive devices eventually become less effective. Emotional problems arise, such as depression and anxiety. But there’s a less well-known problem that affects a person’s will. When the accumulation of daily hurdles wears a person down, he or she may become demoralized.
Demoralization means the defeat of a person’s spirit. Some personalities are more buoyant or optimistic by nature, but the effort to muster bravery and a positive attitude can weary the very core of a person. A 2019 paper published by a small group of researchers from two university centers (Yale and Columbia) describe demoralization as feelings of helplessness, hopelessness, and an inability to cope.i This goes deeper than depression, and erodes a person’s self-confidence worse than anxiety.
For the study, the research team recruited 60 people with ET who participated in questionnaires, evaluations, and tremor disability assessments. What the team found is not surprising, given the chronic problems encountered by those with ET. Just over 13% of the study group experienced demoralization; the authors liken this to demoralization rates observed with other chronic or terminal illnesses such as cancer, Parkinson’s disease, and coronary heart disease.
Demoralization should not be confused with depression. Even though the two states might co-exist, “…54% of depressed subjects were not demoralized, and 25% of demoralized subjects were not depressed.”ii But, if demoralization is not the same as depression, what is it? The authors theorize that it is a separate state, not necessarily connected with how severe a person’s tremors are. They leave us with the message that demoralization in ET deserves more attention by researchers, but they give no clues as to how it might be best addressed.
Rising above despondence and demoralization
ET and the problems it brings can get a person down, sinking into defeatism. Once there, it doesn’t seem possible to overcome it by an act of will, just as all the determination in the world doesn’t stop tremors. A ray of sunshine, though, lies in an old Beatles song: I get by with a little help from my friends. The antidote to despondency is a combination of encouragement and inspiration, and those ingredients are found in the support of others who are also dealing with ET. The countless people who participate in local support groups or online discussion forums like our Essential Tremor Awareness & Support Facebook group give us a model for transcending demoralization.
The key elements that abundantly characterize participation in such groups are identification and hope:
- Identification means recognizing in ourselves what we can’t name or are afraid to admit. It is such a relief to hear that we aren’t alone, and that it’s normal to feel what we feel in such circumstances!
- Hope means seeing that there are alternatives that have worked for others, sparking our imagination to conceive that one or more of them can work in our situation.
These intertwined elements are far more than a band-aid. Identification and hope go to the place in us that lies deeper than anxiety and even depression, the place of broken hearts and wounded spirits. Together, identification and hope make it possible to take heart, lifting our spirit above demoralization.
iCersonsky TEK, Kellner S, Morgan S, Consentino et al. Demoralization in essential tremor: prevalence, clinical correlates, and dissociation from tremor severity. CNS Spectr. 2019 Apr 3:1-8.