Parkinson’s Patients and Caregivers Need Empathy

“Thanks for putting into words my experience with Parkinson’s. I’m going to share your column with my doctor.” Readers of my “Possibilities with Parkinson’s” column have often made such comments. It’s a sincere compliment, and I’m very grateful that my words resonate with others.

However, I can’t help but wonder about how we communicate our illness narrative to providers and family. If we can’t find the right words to share our experience, then how is empathy to occur?

If the reader takes a column to the doctor, does it improve communication and empathy? Does the provider have greater insight into the Parkinson’s patient sitting in his or her exam room? Did he or she take the time to listen to the doubts, fears, and worries that Parkinson’s patients are sometimes unable to fully express?

Treatment of a chronic illness can only be effective if the provider can understand the patient’s suffering. This is one side of empathy — the provider listening to understand the patient’s condition. The other side is the patient’s ability to accurately express their condition. Two key resources are provider compassion and patient courage.

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I write about empathy because it has been my main research focus for over 25 years. I am an empath in practice. It was a part of my clinical practice and a part of me for years. I recognize the need in others to be able to ask for that reciprocal empathetic relationship.

Since being diagnosed with Parkinson’s disease (PD), I’ve been put on the patient side of the experience. Empathy experience is useless if I can’t share my illness narrative in a way that leaves me feeling I was heard and understood. Such is the patient side of empathy. I can’t expect providers, family, or friends to read my mind and fully appreciate the Parkinson’s experience.

It’s often lonely, not having my chronic illness understood. Even a skilled wordsmith feels a disconnect because of the brain fog that envelops and obscures ideas crystal clear in years past. Empathy requires sustained focused attention, and the brain fog is but one aspect of this chronic illness that interferes. The battle consumes my attention, leaving little for expressing empathy.

Inside Parkinson’s, there is more “me” than “we.” I am the patient looking out from within. Others are on the outside. With family or friends, it becomes a dichotomy. They remember us as we once were, more energetic, more fluid in our movements, less fatigued, with clearer thought. Sometimes, they can’t reconcile our chronic disease “self” with that younger version of ourselves. Sometimes, we try to minimize what we experience with them. We don’t want to be a burden. We want to show up at family gatherings without complaining about what we need to do to get there.

One interesting suggestion can be found in the Brain Awareness Video Contest entry called “Parkinson’s Disease Empathy Kit.” The developers devised several techniques that emulate the experience of a PD patient. “Shared experiences and perspective-taking can foster empathy and understanding. The exercises in this video will help you understand what it’s like to live with Parkinson’s,” they say.

For caregivers, like Mrs. Dr. C, the support partnership offers a means to acknowledge the Parkinson’s patient’s challenges. We work hard at communicating with each other every day the difficulties of living with PD. The progressive nature of the illness always presents something new.

In a 2019 article published in the journal Rehabilitation Research and Practice, author Tamene Keneni Walga writes, “Caregivers’ reactions to the results of PD diagnosis of the PD patient under their care differed mainly along three lines. While majority of the caregivers reported that they were terrified, so sad, so sorrowful, or disappointed upon learning that their beloved one had a PD, others were at ease because they had no knowledge and information about PD. Yet, few caregivers tried to embrace it.”

Quality treatment of our Parkinson’s requires providers, friends, and family to understand our symptoms. When the reader says, “I’m taking your column to my doctor,” it’s a statement of need. Rephrased, the reader is saying, “Please read this because it describes what I am going through with my chronic illness.” The Parkinson’s patient is trying to communicate his or her illness narrative more accurately and thus is asking for reciprocal acknowledgement — for empathy.

If my writing can help even one other Parkinson’s patient, or their caregiver, family, friend, or provider, then I feel grateful that I have reached out and made a difference. It gives me encouragement to keep writing.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.