Person in front of sheet of paper with writing on it; pen on desk.

Why You Should Write Your Narrative

An underused tool for wellness is the concept of writing your narrative. When someone is initially diagnosed with a chronic disease, it can be quite a shock. The patient does not know the questions to ask, what to expect in the future, and what type of help he needs. It can take several visits to the doctor to start getting a perspective on how this disease is affecting someone in the long term.

This is especially true for People with Parkinson’s disease (PwP’s). Since symptoms don’t show up until a significant part of the cells in the Substantial Nigra have been damaged or died off, any issues that the PwP has may be diagnosed as something else. It can take years to get a proper diagnosis which often leaves the patient in a state of shock. Writing your story can and should be part of the healing process.

Who are we writing for?

At a recent conference, I was asked to speak about advocacy for people with PD. In my research, I discovered how important it is to have written your narrative before you can begin to advocate on any level:

  • For yourself with your doctors, your family, your employer.
  • For others with Parkinson’s in your community.
  • And even when approaching your congressperson about an issue related to Parkinson’s.

Writing my narrative

About 4 years after my diagnosis, I was finally seeing a psychologist about coping with Parkinson’s disease. At one point he suggested that I write my story. I was not thrilled with the suggestion. Writing was not one of my favorite activities. When I finally sat down and started to write, I found it difficult to stop. The words just kept coming. 3100 words later, I was done. Or thought I was.  

So far my therapist is the only person who has seen my Parkinson’s narrative. Not my husband, my daughters, or friends. It is very personal, but I find that I use parts of it often as I visit my doctors, meet with other PwPs, and even with friends. By the way, the writing has continued, mostly in the form of posts to my blog. My story, and yours, are constantly evolving and need to be kept current. As an advocate for women with Parkinson’s, I have found that I often use key parts of my narrative in many different situations...

Benefits of writingYou may not love writing, but give it a chance.  There are many benefits to telling your story, in any form.Puts things in perspectiveIt will help you take control of your situationIt can reduce frustration, stress, and anxietyUsed as a way to better understand your conditionOften clarifies your wants and needsProvides a type of healing that drugs don’tYour story will evolve as your life doesUseful in many different ways when advocatingHow do you start?I have found that there really are few rules to writing your story. Just start writing, you can always edit later. Don't worry about grammar or spelling at this time. Everyone approaches writing in their own way. I usually start with stream of consciousness and then go back and refine it.  Write privately and with a purpose. There are no grades when you are writing to heal. You do not have to show it to anyone. You should commit to writing regularly to get the benefits of writing. If you are more comfortable drawing than writing, use illustrations with less text to tell your story. Do what works for you. Because your personal story will always be evolving, you may find it useful as a springboard to start journaling. (I will write about journaling in a separate post).What can you do with your narrative?It is your story. Own it. Use it to advocate for yourself with your doctor, your family, your friends. Once you understand your journey with Parkinson’s, you can use any relevant information from your story to determine what your needs are in a particular situation, whether it is looking for a caregiver, lobbying your congressman, or even telling your family what to expect.Most importantly, go back to it from time to time. Look at how you have changed since it was first written. It is so easy to lose track of your progression over time unless you have made an effort to update your story. Your narrative and subsequent updates will give you a true timeline of the progression of your disease and your mental health. With that knowledge, it will be easier for all involved to help you live better with Parkinson's disease.Share your narrative 

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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