No More Shame With Parkinson's
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.
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.
Has it been difficult for you or a loved one to maintain hobbies?