“…millions of individuals [with ET] suffer to varying degrees with embarrassment and humiliation, social isolation and difficulties holding down a job or performing the tasks of daily life. When you cannot drink a glass of water or eat soup without spilling it because your hand shakes violently, you are unlikely to join others for a dinner out. When you have to depend on someone else to button your shirt or zip your jacket, you may not go out at all.”
The New York Times, Dec. 7, 2009
It is natural to avoid unpleasant social situations—and how quickly we learn exactly which situations can be downright painful. It’s not that different from a child learning about hot stoves. Mom or dad may repeatedly caution, “Don’t touch, it’s hot!” but as the saying goes, you only need to get burned once.
For individuals living with essential tremor (ET), social situations can bring many ways to get burned. Questions and comments are embarrassing, even humiliating:
What’s wrong, are you nervous?
Don’t let her even try to pour the coffee.
I heard you lost your job. Couldn’t hold the wrenches anymore, eh?
You poor thing!
Just as bad are the nonverbal, “body English” responses like staring, frowning, overeager “rescuing” that implies you’re inept and useless, and much more.
It’s hard enough when an older adult who’s been reasonably self-confident and outgoing to now develop progressively more pronounced tremors. The embarrassment can eat away at self-esteem. It’s even more tragic for young children with ET who will need much support overcome wanting to isolate while feeling so different (or worse, being taunted or bullied).
Isolation is a vicious circle
The tendency to withdraw can worsen while tremors get more pronounced, medications stop working, and drug side effects are less tolerable. Staying inside can ease some emotional pain but it may bring an unintended consequence. Psychologists tell us that isolation can stir up loneliness and depression. In turn, this starts a vicious circle in which feeling alone and abandoned leads to depression, which makes it more difficult to mobilize outside activity, which then feeds back into isolation.
Meeting relationship needs
It’s vital to stay connected. With or without a potentially disabling conditions, every human needs some time in relationships and some time alone. The balance is different for each of us; extraverts usually need more time socializing in order to feel energized, while introverts generally recharge their batteries alone. But unless you’re a hermit, you have relationship needs – whether connecting with family, friends, co-workers…even saying hi to a neighbor or thanking a store clerk. Don’t cave in to negative thoughts, but practice affirming what a great person you are. Keep in mind that the people in your own circle already love you, accept you, and delight in spending time with you, so put energy into connecting with them frequently, even if by speakerphone or videoconferencing, is an antidote to isolation.
There’s a good way to not only get connected, but also to learn how others with ET overcome isolation. Consider joining an ET support group, which offers identification and hope:
- Identification means finding out that whatever you’re experiencing, others are, too. You are not alone! This is incredibly affirming, providing relief and release from feeling trapped in a world where your own body sets you apart from “the norm.”
- Hope means discovering how other people of all ages who face ET’s daily obstacles, including isolation, are moving through and beyond them.
There are in-person and online groups. If you are comfortable with the idea of attending a group meeting, start with the International Essential Tremor Foundation’s list of support groups by state. Or, if your neurologist is connected with a hospital, get a referral to their social worker who may be able to assist you in finding (or even starting!) a local group. Attending ET awareness events or fundraisers is also a way to meet your peers – and those who love and embrace them.
If geographic distance poses a problem, or groups just aren’t your thing, there is an ever-increasing online community for just about every condition known to humankind. Use your preferred search engine to look for “essential tremor forum” or “essential tremor discussion board” to get a look at what’s available, and shop around to see if one of the resources appeals to you. Then jump right in.
If typing is difficult, consider adding voice recognition software, or one of the new voice-activated home network helpers that are becoming so popular.
At Sperling Neurosurgery Associates, we recognized that ET comes with a complicated emotional burden that can make isolation very tempting. If you’re on Facebook, we offer a private discussion and support page at https://www.facebook.com/groups/sperlingneuro/. We invite all whether you use our services or not.
Finally, there’s one relationship you can never get away from: your relationship with yourself. Make use of your alone time to read and reflect on what’s important in life. As Jane Fonda put it, “Instead of drifting along like a leaf in a river, understand who you are and how you come across to people and what kind of an impact you can have on the people around you…” Remember: you are not defined by your ET, but by who you are. Connecting with yourself may be your most important starting point for overcoming the temptations of isolation.