Don’t Be Alone with Essential Tremor

We all have a basic need to feel accepted. There is security, safety and closeness in believing we are understood and seen for who we are. It feels good to be included.

On the other hand, rejection hurts and is often accompanied by the feeling that we have been prejudged. Others can form swift opinions about us – especially if we are viewed as “different.” Humans are uncomfortable around the unknown. This discomfort is projected onto the “different one” out in a tactless way that sends the message, “I don’t want to be around you because you have a problem.” In most cases, the sender of the message is unaware of a) their own insecurity and b) the impact it’s having on the receiver.

Tremors are “different”

A person with visible tremors (involuntary shaking) is “different” from the majority of people whose hand (or other body part) movements are “normal.” This sets that person apart in much the same way that other many other physical characteristics elicit snap judgments and stereotypes. For example:

  • Being fat = sign of low will power
  • Tattoos and piercings = probably has a criminal record
  • Screaming child in grocery story = product of poor parenting

Tremors are frequently misinterpreted as nervousness, anxiety, or social fear. People with tremors are misperceived as inept or clumsy, leading to embarrassment and feeling rejected. It doesn’t take much before the temptation to isolate and avoid the unpleasantness creeps in.

Finding acceptance and belonging

The primary source of being accepted is a person’s loved ones, family, and friends. However, daily life brings each of us in contact with many others: store clerks, colleagues at work, a librarian or gas station attendant, a fellow party-goer, etc. Furthermore, there are situations in which we have to “on”, such as interviewing for a job or completing a work-related project. There are probably scores of encounters in a typical day in which misperceptions and judgments are formed like lightning with no opportunity to explain or correct.

The heart of the pain is feeling alone with your difference. If enough people react to you as if you’re “alien”, you start to believe it.

Therefore, another place to feel understood, seen and truly connected is a peer support group or organization. If well-organized along the right principles, peer support provides a safety net formed by those who have been there and done that. Acceptance and belonging are immediate and wholehearted. There is a sense of relief similar to returning to a loving home after a long absence.

Here’s what Peers for Progress, founded in 2006 as a program of the American Academy of Family Physicians Foundation and now based at the U. of North Carolina/Chapel Hill, has to say:

Peer support links people living with a chronic condition such as diabetes. People with a common illness are able to share knowledge and experiences – including some that many health workers do not have.

Peer support is frequent, ongoing, accessible and flexible. Peer support can take many forms – phone calls, text messaging, group meetings, home visits, going for walks together, and even grocery shopping. It complements and enhances other health care services by creating the emotional, social and practical assistance necessary for managing the disease and staying healthy.

For those with ET whom the larger world has in some way made them feel invisible, invalidated, or unwanted, peer support is a portal to affirmation, recognition, and unconditional acceptance. On top of that, it’s a wellspring of information about solutions to problems that one individual might not have thought of.

Peer support for ET

Where can you find peer support for ET? At Sperling Neurology Associates, we offer our Facebook ET Awareness and Support Group which now numbers over 500 members. This group is a “no cost, no obligation” service because we know that when similar voices are joined and issues are named for what they are, it is strong, powerful and immensely affirming. There are also established organizations such as the International Essential Tremor Foundation or the Tremor Action Network that provide links to online or in-person peer support.

The bottom line is, don’t be alone with ET. Tremors bring enough other challenges, but being understood and accepted – as well as finding out how others solve similar problems – can uplift and sustain individuals through the journey to solutions.

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