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How to Use Expressive Writing to Live Well with Parkinson’s

how-to-use-expressive-writing-to-live-well-with-parkinsons

How to Use Expressive Writing to Live Well with Parkinson’s

Expressive writing is a brief writing technique that helps people understand, manage and hopefully thrive during challenging times.

It involves writing about troubling issues for 15-20 minutes a day for three or four days. (Detailed instructions on how to engage in expressive writing are at the end of this post.) In this way, expressive writing is much different than daily journaling or diary writing. The value gained from the specific expressive writing format is that it has been found to improve people’s mental and physical health for days, weeks, months and even years compared to people who write about neutral topics.

According to the research of James Pennebaker in his book Expressive Writing: Words that Heal, expressive writing:

  • Makes people go to the doctors less often

  • Enhances emotion regulation

  • Reduces stress

  • Makes people feel less negative over a long period of time

  • Helps people adjust to new situations more easily

  • Improves the quality of our social lives

  • May improve overall health and well being

But how can expressive writing help people who are dealing with a chronic illness such as Parkinson’s?

One of the first studies that investigated expressive writing and chronic illness involved medical patients with chronic asthma and rheumatoid arthritis. Half of the patients were told to write about the most traumatic event of their lives and the other half were instructed to write about something neutral such as their plans for the day. Their health status was examined before, during and up to four months after writing.

Those who wrote about troubling times improved lung function (asthma), joint health (arthritis) and quality of life (both) at a level that was considered statistically significant.

This research became the jumping off point for many of the studies that followed, including studies on expressive writing for autoimmune and inflammatory disorders, pain-related disorders, irritable bowel syndrome, HIV/AIDS, cancers, cardiovascular disease, blood pressure, myocardial infarction, Type 2 Diabetes, major depressive disorder, PTSD, bipolar depression and schizophrenia.

And while we know that expressive writing is not going to kill cancer cells or viruses, it can help boost immune function to a certain degree. It also has the potential to shake people out of a cycle of worrying about their health, change the way they behave in the face of disease and change their emotional states and relationships with others. And along with standard medical care, it can be one of the more enjoyable treatments for improving a person’s quality of life.

How to Use Expressive Writing

Expressive writing has been shown to be beneficial in helping people manage a variety of issues. In the early days, it was believed that people had to write about major traumas and upheavals to see results; however, current research shows that writing on a wide range of topics can be helpful. A few of those include:

  • Writing about an old issue that you keep worrying about
  • Writing about a current, minor problem such as a problem at work, an argument with a child, anxiety about an upcoming event
  • Writing about an upcoming transition such as a job/career change, moving, retiring, divorce, marriage, etc
  • Writing to relax and still your mind if you find yourself obsessing or ruminating about something that is getting in the way of your sleep, productivity, relationships, etc.

In the case of Parkinson’s, it could mean writing about:

  • Something directly related to Parkinson’s
  • The impact Parkinson’s is having on you, your life or relationships
  • The important aspects of your life that have been changed or may change in the future
  • Financial concerns
  • Plans for the future
  • Loss and grief you may feel for dreams you’ve given up
  • And more

The important caveat to this is that just like with most things in life, what works for some may not work for you. Be your own scientist. Always put yourself first, just as you would when experimenting with other complementary therapies/activities to help you live well and thrive with Parkinson’s. Pay attention to how you feel before, during and after your writing sessions and then decide if you’ll continue an expressive writing practice based on what feels best for you.

When Not to Use Expressive Writing

There is no hard and fast rule about this. You have to be your own judge, but here are a few issues to consider.

  • Expressive writing may be too painful if what you’re writing about is overwhelming, is still happening or just recently happened. In this case, it might be best to back off and write about less emotionally-charged topics.
  • Expressive writing may have no effect if you’re writing about something that may or may not happen in the future.
  • Expressive writing tends to be most helpful when using it to deal with traumatic grief or upheaval. In other words, most studies indicate it’s not helpful (though also not harmful) when people write about relatively normal grief or change. (There is also no evidence yet that care partners to those with chronic illness benefit from expressive writing. However, the n=1 experimentation results may be the only data you need.)

When, How Long and How Often Should You Write?

Again, there is no hard and fast rule for this. Initially, studies were based on writing for 15-20 minutes for three or four days in a row. That model worked; however, so have many others.

It is generally accepted that while the writing duration could be anywhere from two to 30 minutes, it is more helpful and instructive if the writing is done multiple times rather than in one sitting.

In terms of how often you should engage in an expressive writing cycle, that depends on how valuable you find it. Because expressive writing is much heavier and intense than journal or diary writing, most people find that going through a cycle every few months, sometimes even less, is enough to reap the rewards.

Getting Ready to Write

  1. Choose a time of day, the number of minutes you’ll write and on which days you will write. Based on what you learn from that experiment, you can adjust going forward. A sample schedule may include writing for 15 minutes, four days in a row. Or writing for 20 minutes every Thursday night for one month.

    One possibility, in order to celebrate Parkinson’s Awareness Month, is to write every Tuesday this month for 15 minutes and then at the end, reflect on how useful it was for you. (We’d love to hear about it!)

  2. Once you begin writing, write continuously. Do not stop to edit yourself, worry about grammar or concern yourself with how anything sounds. If you can’t think of what to write, write that. You can write longhand, type or use a recording device/app.

  3. Write about whatever you think will be most helpful to write about and be sure to write not only about the objective experience but how you felt/feel about it.

  4. To ensure that you write with complete openness and honesty, we recommend keeping these writings to yourself. When it comes to expressive writing, you are the only audience that matters and if you imagine that someone else may see it, it may influence what you write.

  5. Be prepared to feel a little bit sad immediately after writing. Most of these feelings will dissipate quickly, just as they typically do after you’ve seen a sad or emotionally-charged movie. In the end, the overwhelming majority of people feel relief and happiness once the writing sessions have concluded.

Expressive writing is not a cure. And, if you are dealing with something so emotionally taxing that it’s getting in the way of your ability to live your life, please reach out to your healthcare team and ask for help. Expressive writing may be a great addition to your treatment, but it should not be considered a substitute for other medical or psychological treatment.

If you’d like to dive a bit deeper into the research and the nuances of expressive writing, a great resource is Opening Up by Writing it Down: How Expressive Writing Improves Health and Eases Emotional Pain by James W. Pennebaker and Joshua M. Smyth.

More Expressive Writing Resources

Emotional and physical health benefits of expressive writing by Karen A. Baikie & Kay Wilhelm

Expressive Writing: Foundations of Practice Edited by Kathleen Adams

Expressive Writing: Words that Heal Using expressive writing to overcome traumas and emotional upheavals, resolve issues, improve health and build resilience by James Pennebaker and John F. Evans

Writing to Heal: A Guided Journal for Recovering from Trauma and Emotional Upheaval by James W. Pennebaker

Your Brain on Ink: A Workbook on Neuroplasticity and the Journal Ladder by Deborah Ross and Kathleen Adams

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2 Comments on “How to Use Expressive Writing to Live Well with Parkinson’s

    • Paul Gusmann

      May 6, 2019 at 8:57 am Reply

      When I start on memories, one small memory triggers another and another, until the memories start flowing in torrents, thoughts and details become clearer and things I have thought lost come back to mind. This makes me feel very good.

      • Melani Dizon

        May 6, 2019 at 12:21 pm Reply

        Thank you for reading (and writing). Paul!

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