About 7 million Americans have essential tremor (ET) according to estimates. Depending on how long a person has had ET, plus the level of disability caused by tremors, a person with ET is likely to experience some degree of psychological suffering. Other factors enter in: personality, support from family and friends, economics, etc. have a bearing on how tolerable life with ET is. The fact of having to live with ET generates psychological pain that can show up as anger, frustration, depression, loneliness, fear, anxiety, isolation, and more. Understandably, the greater the hurt, the more likely it feeds into depression.
Impact of ET on family and friends
About half of ET cases have a hereditary component, so other family members have also experienced it. However, there are millions of caring others (family or friends) who love the person with ET but have not personally experienced tremors. Yet deeply for someone with ET has an impact on the loving other who does not have ET, even if he or she is a member of the same family with a history of this condition.
It is common for a “caring other” to also have psychological pain over the relative/friend’s ET. Of course, any time we see a dear friend or relative struggling with a temporary or chronic challenge, our heart goes out to them as we empathize with the obstacles and pain they feel. It is stressful to watch a loved one suffer. If the caring other is also involved in assisting the person with ET, it can lead to increased stress for both of them if the tremors worsen.
Studies have shown that in such conditions as ET, osteoarthritis or dementia, caring others often perceive greater suffering than the patient is experiencing. In fact, there are times when the caring other is practically in greater turmoil or depression than the person with ET. In an earlier blog on caregivers’ needs, I wrote, “The more the caregiver believes the patient is in great mental and spiritual distress, the more the caregiver feels a heavy load.”
A new study confirms the suffering of caring others
I found a 2017 study by a team from Yale and Columbia universities titled “Psychological Suffering in Essential Tremor: A Study of Patients and Those who are Close to Them.”i While the study was relatively small (50 pairs, each composed of a person with ET and his/her caring other) it was very thorough and well analyzed. The caring other was characterized as someone who knows the person with ET well, sees them often, and is able to provide a “different perspective” on the ET persons’ well-being.
Some of the observations noted in the paper are what we might expect:
- For those with ET, the longer their tremor duration and degree of disability, the more psychological and overall suffering they self-reported
- For those with ET, the greater their psychological and overall suffering, the greater their scores on depression symptoms
- For caring others, their perception of the degree of psychological suffering of those with ET likewise correlated with duration and disability
- For caring others, the greater their perception of the suffering of those with ET, the greater their own self-reported daily stress and depression symptom scores
It is no surprise, then, that when those with ET suffer, those who care for them also suffer. What may be surprising, however, is that caring others tend to over estimate how much their loved ones with ET are suffering. When ET has this impact on a caring other, it can lead to unintended difficulties. As the authors write:
On the one hand, a patient’s suffering may not be taken seriously; on the other, family members may be perceiving suffering that does not exist. This is especially important given that patient experiences and [caring others’] perceptions of patient suffering have been shown to have implications for both dyad members’ mental health. Miscommunication about suffering may also have negative effects on caregivers’ and clinicians’ support behavior.
What’s the best thing to do?
Fortunately, the “antidote” to trying to guess how much a person with ET is in distress is to have open and honest communication between the person and his/her caring others. A starting point might be a simple statement followed by a simple question: “I know you care about me and you probably are worried about me, which I greatly appreciate. Would it help if I told you how ET affects me?” This can be the starting point for better understanding—and even greater closeness.
An alternative to ET medications
One final note: in the abovementioned article, the authors note that some of the ET patients in their study population were on 5 or more medications, and those participants self-reported higher levels of psychological and overall suffering due to the degree of severity of their tremors and disability. Sperling Neurosurgery Associates offers a one-time, safe and effective treatment as an alternative to being on medications. It’s called MRI-guided Focused Ultrasound (MRgFUS or Neuravive), and it is an outpatient, noninvasive procedure. For more information, contact Sperling Neurosurgery Associates.
iMonin J, Gutierrez J, Kellner S, Morgan S et al. Psychological suffering in essential tremor: a study of patients and those who are close to them. Tremor Other Hyperkinet Mov (NY). 2017;7:526.