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Social stigma and Parkinson’s: Being stigmatized for looking different

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Social stigma can be felt by anyone who looks or acts differently in society. When it comes to Parkinson’s, social stigma refers to the beliefs people hold about others with Parkinson’s and the actions that result from those beliefs.  

To understand how social stigma comes about, we can ask ourselves how we perceive different people in our society. Do we see people with chronic depression as people who are simply choosing to think negatively? Or as people with an illness that needs treatment, accommodation, acceptance and compassion? Do we see people who move more slowly as fragile and unable to do their job? Or do we see them as people just as qualified as ourselves who require accommodation to do the same caliber of work as us (or better)?  

Here are a few stories from Canadians living with Parkinson’s about how they have experienced social stigma in their lives and how they are addressing it. 

The social stigma of a hand tremor leading to diagnosis 

Man smiling while holding babyDiagnosed with early onset Parkinson’s at 45, Philip Severin saw how his colleagues spoke negatively about an employee with a drinking problem who displayed withdrawal symptoms like shaking hands. When Philip developed a tremor in his hand, he was fearful that the same social stigma would be applied to him and engaged in conversation with his doctor. That conversation ultimately led to receiving a diagnosis of Parkinson’s. In essence, his colleagues’ attitudes and behaviours towards someone with shaking hands was responsible for Philip opening a dialogue with his doctor.  

Philip reflected on the news of his diagnosis by remembering an acquaintance from earlier in life who had had Parkinson’s. That person was very high functioning and needed little help. Philip felt he would manage his Parkinson’s similarly and was able to learn to communicate his need to prioritize his independence. “Being able to communicate your needs is important,” Philip says. “As situations come up where those closest to you stigmatize you as needing 24/7 care and doting on you well before your symptoms require it.”  

Before he found the ability to express when he didn’t require assistance, Philip attended a barbeque and sat on a lawn chair positioned on a slight downward slope. Many of the guests at the barbeque expressed alarm for Philip’s safety, but he felt sturdy, safe and wanted to be left alone. Now, he’s found ways to communicate his independence and ensures people aren’t stigmatizing him as someone needing constant support. It’s created trust between him and his support network as they know Philip will ask for help when he needs it, too. 

Social stigma when people don’t recognize or understand the symptoms of Parkinson’s 

It’s an unfortunate reality that our society is quick to pass judgement on those who move, look or act differently than expected. As we do everyday things like grocery shopping, banking and attending social gatherings, we encounter people who may or may not recognize Parkinson’s symptoms or understand how symptoms ebb and flow, too. So, a shuffling walk, masked face, slowed movement, or any combination of motor-symptoms may bring about judgements from strangers.  

For instance, a stranger in a grocery store once accused Philip of giving “dirty looks.” Facial masking as a symptom was not on this person’s radar, and they resorted to passing judgement.  

As we covered in our piece on internalized stigma, these judgments are hurtful and often leave lasting effects on people with Parkinson’s, making it difficult to even want to leave the house. In Philip’s case, he tapped into his communication skills and chose a gentle teachable moment for the person. He overheard what they were looking for and found it further down the aisle for them. When he called out to the person to start the conversation, it gave them a chance to think twice about their assumptions of Philip. While in this particular situation, Philip didn’t start the “this is what Parkinson’s looks like,” conversation, he knew their judgements were rooted in a lack of knowledge. And he doesn’t let those remarks cause any further anxiety for himself – a symptom of Parkinson’s Philip also experiences.  

Greg McGinnis, who was diagnosed with early onset Parkinson’s at 39, recalls countless interactions like Philip’s in grocery stores and other settings that, up until somewhat recently, would make him incredibly angry. It wasn’t until Greg connected with a Parkinson Canada support group in his area that he was able to begin processing the impact of these encounters, and how to find compassion for those passing judgement. Since then, Greg has embarked on a Parkinson’s advocacy journey to help battle the social stigma he’s felt stung by more times than he can remember.  

When your stigmatized for not looking like others with Parkinson’s 

Hour by hour, Parkinson’s symptoms go from not being detectible at all, to being very easy to see, which means onlookers may draw their own conclusions about people with Parkinson’s based on momentary interactions – not a full picture. Even those closest to you can stigmatize you when your Parkinson’s looks different than what they expect, treating you differently based on what they see.  

Greg shared that he encountered moments where people around him struggled to believe he had Parkinson’s. Like many, Greg’s symptoms present differently than what some people expected to see (the stereotypical tremor isn’t always there) especially when his symptoms vary in intensity based on how well his medication is working. 

Greg’s symptoms include depression and anxiety, blood pressure issues, dystonia and more. 

“People don’t understand everything Parkinson’s takes from you, and they don’t understand that symptoms come and go as well,” Greg says.  

Like Philip, Greg has also discovered that improving his communication skills with family, friends, and the general public has improved how social stigma is resolved around him. For instance, when he and his son Tyler take the boat out on the water for the day, where there were once tension-filled moments about how to safely get Greg in and out of the boat, there is now routine and communication. In this situation and many others, Greg and his family and friends have created workarounds and small changes to accommodate Greg’s mobility needs, thanks to the improved communication between them.  

Parkinson’s social stigma around the globe 

When we think about stigma and Parkinson’s, we often do so from our own cultural and societal contexts. But Parkinson’s disease is stigmatized differently around the world and is more intense in places with less access to information about it. 

“Some areas like Uganda, Cameroon, and Nigeria, have immense social stigma for people with Parkinson’s. People are often cast out of their communities because they’re believed to be cursed or possessed,” says Dr. Soania Mathur, cofounder of PD Avengers, a global alliance unifying the global Parkinson’s community. 

In other areas of the world, such as Nordic countries like Norway, social stigma is easing up as people living with Parkinson’s in those areas feel emboldened to share and educate the public. One such initiative is Norwegian photographer Adners Leines’ This Is Parkinson’s Exhibition that has received global attention for helping inform the public about Parkinson’s and battling its social stigma. 

Want more on stigma? Here are blogs that cover the two other forms of stigma impacting people with Parkinson’s: 

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