No More Shame With Parkinson's

By Gretchen Rosswurm

2 min read

Since I was diagnosed with Parkinson's in 2017, I have been overwhelmed with feelings about my health and the future. Of all the emotions I have experienced with Parkinson's, shame is the worst.

When I am in a state of shame, I feel responsible for my disease. I am sad and often very anxious. I have disturbing thoughts. I feel unimportant to my family, believing that I am no longer capable of doing the things I love and that I am a burden to all. I feel ashamed that I am no longer “normal” and never will be.

Parkinson's disease and shame

As a Person with Parkinson's (PwP), I wanted to understand more about shame and how to overcome it. I found an article in the Journal of Parkinson’s Disease that addresses shame and its effect on PwP.

The Journal of Parkinson’s Disease confirmed the unspoken feelings that PwP experience, “Shame is a self-conscious emotion marked by intensely negative self-evaluation. . . Shame can be a source of emotional distress leading to social withdrawal and depression with a significant negative impact on quality of life".¹

The article also explained that shame in Parkinson's can come from many sources. A PwP may feel shame due to the symptoms they are experiencing, a loss of independence, or from the negative changes their body is going through. ¹

Learning to live without it

I wanted to find out how PwP can live without shame. I turned to the work of Dr. Brené Brown, a research professor who has 20 years of experience studying courage, vulnerability, shame, and empathy.

Her studies reveal this: Shame can only flourish in an environment of secrecy, silence, and judgment. PwP do not have to live with shame, but it takes courage to overcome it.

Tips to overcome shame

Talk to yourself like you are talking to someone you love.
Reach out to someone you trust and share your concerns, situation, or fear. Do not let feelings of shame fester.
Tell your story to the people you feel safe with. Perhaps a friend, counselor, or a member of your religious faith.
Try Compassion-Based Therapy or talk-based therapy.
Know your shame-based triggers and have a plan to block them before shame takes root. One of my shame triggers is being asked why I am not working. This can set me off if I do not get ahead of it. Now I have a plan. I say, “I’m working from home and really enjoying it.” End of discussion.
Seek activities that enhance positive feelings
Volunteer with the Parkinson's Foundation or your favorite nonprofit organization.
Find a support group. Some options include: American Parkinson Disease Association, Parkinson’s Foundation, and Parkinson’s Movement Disorder and Alliance

Since my diagnosis, shame’s shadow was never far away. No more. Today I urge us to believe in our worthiness and to share that with all PwP.

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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Krukar2012 Member
Gretchen, I am also a PwP. I really like that label. Shame is such an oppressive feeling. For me if I have done nothing to cause my malady I refuse to feel responsibility for contracting it. The tips you provide for overcoming shame are excellent. I have found that having respected pals with this common illness is particularly helpful. These are men who share their experience and we just like to talk. Positive self talk is also a great strategy. 
1. Gretchen Rosswurm Moderator
 <inline-mention username="Krukar2012" user-id="4161271"/> Thank you.
Marc Mitnick Member
Thank you Gretchen for your article on "Shame." I don't think of PD as a shame. I look at it like any other disease like Diabetes, Hypertension, COPD, etc. As a PWP, I look at myself as a normal person who has a concurrent illness. I did not cause it, therefore, I do not take ownership or shame to have it. As you proclaimed, 'You are Worthy!' Marc M. Moderator, <a href='http://ParkinsonsDisease.Net' target='_blank'>ParkinsonsDisease.Net</a>
1. Gretchen Rosswurm Moderator
 <inline-mention username="Marc Mitnick" user-id="3083283"/> Thank you.
fignewtons3 Member
Thank you for your post. You are not weak. You are courageous.
Gretchen Rosswurm Moderator
Thank you.
Suzanne Troy Member
Hi Gretchen, You are courageous for sharing your story! Thank you! There is no shame in that! As a daughter of someone PyP (new term I learned!) I appreciate that you shared your feelings as it's not always easy to understand how my dad is feeling, especially he is 86 and becoming much less verbal. Also, I see where shame comes in many shapes and sizes. My young adult son has attention deficit and has experienced shame in many situations. Gretchen, you did an amazing job of sharing your story and how to put shame in it's place. Kudos to you. Take care, Suzanne, advocate, ParkinsonsDisease.net
Gretchen Rosswurm Moderator
Thank you for your support.<inline-mention username="Suzanne Troy" user-id="4147628"/>

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