Neuro Talk: Stigma and Parkinson’s

As a movement disorders specialist, one issue that people with Parkinson’s disease (PD) often bring up to Sneha Mantri, MD, during office visits is stigma. Stigma stems from stereotypes and lack of understanding that can lead to judgment, delayed diagnosis, isolation and feelings of shame for people with Parkinson’s and chronic diseases.

In our latest Neuro Talk, Dr. Mantri, Chief Medical Officer of the Parkinson’s Foundation, highlights the stigma that can accompany living with Parkinson’s and how it is being researched. Dr. Mantri and the Parkinson’s Foundation believe that combatting stigma through education, storytelling and awareness efforts can help the greater PD community. Dr. Mantri highlights what stigma looks like for people with PD, research findings surrounding stigma and ways to combat it.

What is stigma?  

Stigma is when a person or group is judged or treated unfairly because of a negative belief or stereotype about them. Stigma is associated with stereotypes, prejudice, discrimination and exclusion. Experiencing stigma can significantly impact the lives of people living with Parkinson’s and care partners.

What does stigma look like for people with Parkinson’s?

Stigma around Parkinson’s often begins with misunderstanding. Stereotypes ignore the reality that people of all backgrounds — men and women — live with PD. Visible symptoms like tremors, freezing of gait or speech issues can be misread as intoxication or aging, rather than signs of a complex neurological condition. These reactions can be hurtful and isolating.

Many people with Parkinson’s internalize stigma, leading to delaying treatment, hiding symptoms or their diagnosis out of embarrassment or shame. In the workplace, stigma can fuel fear of being seen as less capable (learn more about employment with Parkinson’s). It can also show up as fear of becoming a burden to loved ones. Acknowledging these experiences is a critical step toward breaking down stigma.

Research Findings Surrounding PD and stigma

Stigma worsens quality of life for people with Parkinson’s. Researching stigma is critical, as bringing academic attention to the topic is critical to addressing it. Research has found that stigma:

• Shapes the PD experience.
• Contributes to social anxiety, isolation, hesitation to seek medical care, loneliness and emotional distress.
• Misconceptions and bias lead to people with Parkinson’s being stereotyped, devalued or even avoided. This, and worsening symptoms over time, can lead to self-stigma, impacting self-esteem and depression.
• Many people with Parkinson’s have experienced a form of stigma.
• Stigma can take many forms. Felt stigma is when someone believes others see them negatively.
• Care partners may experience affiliated stigma, facing bias because they are connected to a person with Parkinson’s.

For doctors and healthcare professionals, understanding stigma’s impact can help them respond with greater empathy and more proactive care strategies. This is crucial people with Parkinson’s and care partners, who often experience their own forms of stress and social isolation.

Ways to Combat Stigma

One of the most powerful ways to reduce stigma is through education and staying connected. The Parkinson’s Foundation works to share information about Parkinson’s to help spread awareness and knowledge, breaking down the misconceptions that fuel stigma. Explore Parkinson’s Foundation resources now.

“As a movement disorders specialist, I talk to patients about stigma. Research shows that practicing narrative medicine — using a patient’s story to guide care — helps their care team address the issues that matter most to them. This approach can strengthen independence and reduce stigma.” – Dr. Mantri

Personal stories (including My PD Stories), humanize Parkinson’s and highlight resilience. While community engagement — through events like Moving Day, support groups or exercise classes — helps people feel less alone and build connection.

Everyone can play a role in reducing stigma by knowing the signs of Parkinson’s, volunteering or sharing information to raise awareness.

Watch Dr. Sneha’s latest Neuro Talk and catch up on past topics at Parkinson.org/NeuroTalk.