What is stigma?
As a person impacted by Parkinson’s, even if you can’t define stigma you know what it feels like.
It’s in the decision to stay home instead of attending your child or grandchild’s recital for fear of judgement about your dyskinesia. It’s in the stare you get for using an accessibility parking spot when your symptoms aren’t presenting. It’s in the accusation of being inebriated when your balance is off. And often, it is in the moment of job loss, too.
Stigma exists where people are labelled, stereotyped, discredited, and discriminated against based on certain attributes which are devalued by society, in a context where they have reduced power.
Knowing about stigma, how it can impact mental health and how we can work together to reduce it, will have lasting improvements on the quality of life for people living with Parkinson’s.
Three kinds of stigma
Stigma can be bucketed into three main categories, and a person living with Parkinson’s can face more than one. Stigma not only impacts the person diagnosed with Parkinson’s. The community of people who surround them are likely to experience stigma in all its forms as well. They are just as likely to encounter negative feelings like shame and embarrassment with internalized stigma, feelings of guilt and anger with social stigma, and witness the harmful effects and feel the frustration that institutional stigma brings.
Physical symptoms like facial masking, stooped posture, clenched or trembling arms and shuffling gait can be a root cause of stigmatization for people with Parkinson’s as those symptoms counteract social norms about “normal behavior” in social.
This can look like:
- Someone assuming you’re in a bad mood, disinterested or defensive because they’re misinterpreting your body language and don’t know about the symptoms of Parkinson’s.
- Someone assuming you need so much hands-on support that your sense of independence is infringed upon because they don’t understand how Parkinson’s symptoms can ebb and flow from moment to moment.
- Someone being impatient with you at the grocery checkout because it takes you longer to bag groceries than it would take them.
- Someone not understanding that a care partner cannot attend a social event because they need to stay home with their loved one.
For Janice Horn, an artist who was diagnosed with early onset Parkinson’s, social stigma played out in a conversation with someone who didn’t know about her diagnosis. The person’s mother had Parkinson’s and he told Janice that he believed his mother was “faking it” because sometimes she could walk perfectly fine and other times she couldn’t walk at all. Janice was trying to prompt him to consider the reality that people with Parkinson’s have changes in symptoms day to day and even hour by hour without telling him that she, too, had Parkinson’s.
Read more about social stigma, Janice’s advice in addressing it and hear from others who shared their thoughts on it as well.
Institutional stigma (also known as structural stigma)
Institutional stigma refers to stigma that is woven into the fabric of society via laws and policies. Institutions like government, media, places of worship, education and places of business operate based on policies that either directly or indirectly impact quality of life for people with Parkinson’s and care partners alike.
This can look like:
- Cutbacks in government funding for mental health services caused by a lack of awareness that chronic neurodegenerative diseases like Parkinson’s have an array of mental health symptoms.
- Media coverage of celebrities with Parkinson’s painting a picture of helplessness, losing a battle or focusing on the presence of physical symptoms like drooling and tremors which further stigmatizes those symptoms.
- Education programs in health-related fields having limited focus on Parkinson’s despite the ever-growing number of people diagnosed with it.
- Workplaces not having policies in place to accommodate the developing needs of employees impacted by Parkinson’s, like insufficient time-off policies for care partners to maintain their employment while caring for their loved ones.
For Philip Severin, who worked in print production for more than 20 years before receiving his EOPD diagnosis, institutional stigma was at play when his decision to disclose his diagnosis to his employer led to him being let go. His employer was ill-equipped to accommodate him and lost an employee with vital expertise as a result.
Find more information about institutional stigma, hear more from Philip and others who have faced it and discover how the Parkinson’s community can advocate for change on institutional levels to improve quality of life for everyone impacted by Parkinson’s.
Internalized stigma (also known as self-stigma)
The first two types of stigmas mentioned above – social and institutional – are forms of what is called “enacted stigma,” which is a term used to describe the negative reaction (through attitudes and behaviours) that people with Parkinson’s receive from others when they’re being stigmatized.
When someone expects or fears enacted stigma, this is known as “internalized stigma” or self-stigma. It’s what we tell ourselves others think of us based on the social and institutional stigma we’ve seen happen over the course of our lives.
Because internalized stigma is associated with feelings of shame and low self-esteem, this form of stigma can be a factor in developing depression and has been shown to significantly impact quality of life for people with Parkinson’s.
This can look like:
- Deciding not to partake in social meals when you’re experiencing swallowing difficulties, leading to feelings of isolation as mealtimes serve as important social functions.
- Keeping your diagnosis to yourself for many years for fear of the people in your life treating you differently or acting differently around you.
- Not going for daily walks any longer because during a previous walk, someone misattributed your shuffling to alcohol misuse and made a hurtful remark.
- Feeling diminished when needing to use assistive devices like walkers, wheelchairs or canes.
- A care partner experiencing burnout but is unable to accept the help of respite care because of an overwhelming sense of guilt in doing so.
For Dr. Soania Mathur, no amount of pre-existing knowledge about Parkinson’s could quiet the self-stigma she was hearing in her own mind. Fears about what the diagnosis meant for her professional career ran rampant in her thoughts. And learning first-hand about the non-motor symptoms of Parkinson’s meant experiencing intense depression and anxiety.
Read more about Dr. Soania Mathur’s experience with internalized stigma, how she and others have overcome it and how important a sense of community is when challenging it.
Harmful effects of stigma
People with Parkinson’s rarely face only one kind of stigma. With each experience, the impact it has on wellbeing and quality of life begins to compound.
For instance: Jane Doe feels embarrassed about her bradykinesia but decides to go for lunch with a friend. After finishing her meal, she is unable to move her legs which causes her great anxiety. The waiter gives her all the time and space she needs, but despite that she feels flooded with embarrassment as she exits the restaurant and notices other guests are staring at her. The experience leaves a lasting impression on Jane Doe, and she realizes she is feeling as if she will never leave the house again. She wishes she could seek professional help to talk it through, but she doesn’t have benefits and her spouse makes too much money to qualify for any government funded mental health programs.
This situation compounds the internalized stigma Jane Doe felt about herself with an experience of social stigma that confirms her negative self-beliefs. Then, institutional stigma creates a barrier to mental health services which would be instrumental in helping Jane Doe overcome these feelings and get back to enjoying her life.
Just as every diagnosis comes with a unique presentation of symptoms, stigma affects everyone differently. These are just some of the ways stigma impacts people living with Parkinson’s:
Effects related to social stigma
- Lack of understanding by family, friends, co-workers or others.
- Bullying, physical violence or harassment.
- Discrimination while interacting with customer service personnel without a care partner present.
Effects related to institutional stigma
- Fewer opportunities for work, school or social activities or trouble finding government funded housing.
- Business establishments are not equipped to meet the needs of people with Parkinson’s.
- Health insurance doesn’t adequately cover your disease management needs.
Effects related to internalized stigma
- Reluctance to seek help or treatment.
- The belief that you’ll never succeed at certain challenges or that you can’t improve your situation.
- Isolation and a sense of being a burden to others.
A plan for tackling stigma
Overcoming internalized stigma, standing strong in the face social stigma and understanding how institutional stigma complicates life with Parkinson’s are all grounded in self-education and self-acceptance.
Educating yourself is the first step in tackling stigma and living a life unhampered by it. When you learn that the beliefs you have about yourself are influenced by the social and institutional stigmas that surrounded you pre-diagnosis, you are free to challenge them.
You gain this education by meeting others with Parkinson’s, learning how they have maneuvered through their own internalized stigma, and by trialing the strategies that worked for others, like professional therapy or a cognitive behavioral therapy program.
To connect with other people affected by Parkinson’s in your community, consider joining a support group.
Challenge yourself and educate others
Living with Parkinson’s is a challenge in and of itself. Meaning, you’re already familiar with what “challenges” looks like. Take that self-education to the next level by lending compassion to others who pass judgement on you because they’re working with limited knowledge of Parkinson’s just as you once did. Then, (when you can) teach others about Parkinson’s in the moments you experience social stigma.
In 2014, Tom Isaacs, a steward of Parkinson’s awareness, published a hierarchy to describe the stages of processing a diagnosis of Parkinson’s. In it, he discusses the self-growth required to get to this point – the point where you can begin comfortably educating others as you encounter them.
Advocate for your community
Many Canadians with Parkinson’s have said that finding a community of people with Parkinson’s helped them through their journey with self-stigma and finding compassion for themselves. The collective voice of that community is used to challenge the policies and laws in place that give way to institutional stigma.
Parkinson Canada is here to help you share your story and find opportunities to engage with advocacy efforts in your local area.
For more information about Parkinson’s and its symptoms, contact our information and referral team.
Stigma content is sponsored by Merz Therapeutics.