A Letter to Myself on the Day I Was Diagnosed With Dystonia


Dear Elizabeth,

Today I tell you that you have generalized dystonia, and no one knows why. For you, the diagnosis means you can no longer work and should consider applying for disability. Your movement disorder will not go away. I know you thought that somehow, some way, you would get better and return to work, but I tell you, that is not so.

And now, the future begins. It will be hard at first to learn a new way to identify yourself and find your worth. Having been an accountant with international work and travel experience, you must change your radar. When people ask you what you do, you must hold your head high and believe in yourself. You are not your job. You are not unemployed. You are not your disability. You are retired to a new way of life. You do not owe anyone an explanation as to why you no longer work. In time, you will see that this question becomes more comfortable to address and you will find creative ways to answer it. If you say, “I am retired,” people will smile and want to know your secret, because they know you are not yet 65. If you discern that the person asking the question is receptive and empathetic, you can explain why you no longer work. Be aware that not everyone can hear or care about your disability.

Your life as you knew it will evolve into something new and wonderful. As you take a step into each day, you will find new paths and learn what moves you. You can only do what you have energy for now. You can no longer push past your limits, so be mindful of how you spend every minute of your time. You will follow your truth, for that is all you have now. You cannot fake interest in frivolous things and waste a drop of your time.

The things you didn’t have time for before, you will have time for now. The things you were always supposed to do for your health — eat right, get enough sleep and exercise, are possible now — The time that is focused on self-care will lessen as your medical treatment improves.

Some of your most cherished days and friendships lie ahead.

Some people in your life will not understand your inability to work. Believe me, it is for reasons within them, not because you are faking it or are lazy. You have worked hard to get where you are today and to stay strong through the years of illness. You are not living the easy life, even though some may hint that you are.

Take heart. There are those, who, if you trust in what I say, will accept you as you are and want to know you, including your disability. They will be open and see past the medication, the limitations, the need for rest and the retirement. They will make you a part of their lives and you them.

Your world as you know it today will transform into a life of new riches.

Look to your parents. They were always there for you. Your work life kept you too busy to notice, but now you will have time to spend with them, and you will need them. It is OK to need them. They need you, too.

Put one foot in front of the other every day. Do not stop. Do not look back. And never give up. Move when you can and try new things. You will see that one action leads to another, and soon you will be able to exercise. It will bring you energy. Movement
will take your mind off of what doesn’t work. You will make friends and find a
community where you exercise.

Most of all, find out what this condition is that you have and find others with it. This will lead you on a path to things you thought were long gone and no longer possible: speaking, writing and leading.

Today you have a diagnosis that is a doorway to a new life.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images


Find this story helpful? Share it with someone you care about.