Coping with essential tremor is an emotional process

The Five Emotional Stages of Essential Tremor

Essential tremor is an emotional journey that starts with the first inkling of uncontrollable movement. It could be something as barely noticeable as a slight shakiness when you lift a glass of water to your lips. Or someone at work kindly asks if you were aware that you were slightly nodding your head throughout a meeting. In those early days, if you tend to be a worrier, you may jump to worst-case scenarios: “I have Parkinson’s disease. Maybe it’s a brain tumor.” On the other hand, you may be the type to think, “Well, it’s probably all the stress I’m under. If it goes on for long, or gets worse, I’ll see a doctor.” In either case, it doesn’t go away, and you end up seeing a neurologist who gives you a diagnosis of essential tremor (ET). You now know you have a chronic disorder that may progress over time, and it poses an unknown threat to your overall health and quality of life.

Underlying that feeling of being threatened is fear of loss. How will your sense of self and self-worth be affected? If it gets worse, will you still be able to earn a living? Will your spouse still find you attractive? Can you travel, play with your kids or grandkids? What if you can’t feed or dress yourself? In other words, ET comes with a sense that you may lose things that are precious and meaningful to you.

ET patients don’t die from the disorder, they die with it. However, this can be slight consolation. There is often a deep but unspoken grief at the prospect of unknown future losses. Those familiar with Elisabeth Kübler-Ross’ 1969 book On Death and Dying know about her identification of five emotional stages people go through when coming to grips with death. Since then, application of the 5-stage process has been broadened out. It is now called the five stages of grief. The feelings rarely happen in an orderly fashion – they may overlap, disappear and reappear – but when closure occurs, there is peace and renewed energy.

Here are some ways in which newly diagnosed ET patients may experience the five stages:
1. Disbelief – This is the body’s normal way of taking time to digest shocking news. With ET, as a person learns more, gains correct facts as well as probabilities, and understands the implications, disbelief is gradually replaced by adjusting to the new situation.
2. Anger – This can take many forms, from feeling betrayed by the body to blaming one’s genes to being short-tempered with loved ones, or making ET the enemy (“I’m going to win this battle” or “I can conquer this.”) The important thing is to remember that anger is an understandable response, and while not necessarily productive, it can help mobilize energy and determination to make and implement constructive lifestyle changes.
3. Bargaining – Usually this stage is short, if it occurs at all, because one quickly wakes up to the fact that wishful thinking is useless. “If only I had seen the doctor sooner.” “If only I didn’t do drugs when I was younger.” None of this proves helpful, so the patient moves on.
4. Depression – This is grief in disguise. It’s like an undertow. The wisest advice is to relax and go with it even though you feel like you’re about to drown. Fighting it will only exhaust you. It’s best to give in to the sorrow. Like the undertow, if you relax the current brings you up to a new place where you can see the shore, breathe again, and begin a diagonal path back to dry land.
5. Acceptance – The first four stages help a person come to terms and accept the situation for what it is. At this point, there is a sense of peace and effectiveness as the patient comes to feel empowered to make useful, wise decisions.

At the point of acceptance, the patient may find that, by including others and assuring them that it’s not life threatening but will require adaptation, the door opens to a host of resources, including emotional resources and offers of help. In turn, this generates a positive recognition that the patient is not isolated or trapped, but surrounded by a caring community.

Finally, those with ET are not held back from contributing to others. President John Q. Adams, actress Katharine Hepburn, General Douglas MacArthur, musician/actor Ozzy Osbourne, Supreme Court Justice Sandra Day O’Connor and countless others were not held back from their accomplishments by their disorder. Whatever emotional process they went through, they serve as shining examples of coming to emotional acceptance of ET.

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