Internalized stigma, or self-stigma, is made up of the negative perceptions and beliefs we hold about ourselves. These beliefs can be based on previous experiences where hurtful remarks or judgments were made about us, or based on our fears of receiving those harmful messages (whether they’ve actually happened before or not).
The journey you take to overcome internalized stigma so it no longer, or rarely, impacts you is as individual and unique as your Parkinson’s. Some experience intense self-stigma, which has been shown to be a key indicator of depression and poor quality of life for people with Parkinson’s.
Below you’ll hear the journeys of a handful of Canadians living with Parkinson’s as they moved through intense self-stigma and into a mindset that allows them to live (mostly) free of it.
Janice Horn: From self-stigma to self-compassion
The way we moved through the world before our lives were impacted by Parkinson’s plays a big role in how we see ourselves afterwards, and how we believe others see us. When we encounter something as monumental as a Parkinson’s diagnosis in our lives, we digest that news alongside preexisting beliefs about ourselves, our place in the world and what we think of people who are “different.”
Janice Horn was diagnosed with early-onset Parkinson’s at the age of 39. For her, internalized stigma was a huge hurdle. “It’s fighting your own inner critic,” she shares. Her internal talk told her this diagnosis meant she wasn’t going to be who she thought she was in this life which fostered a worsening depression.
Not long after receiving her diagnosis, Janice was invited to attend a bridal shower. During this time, she was feeling self-conscious about her dyskinesia (involuntary movements that can occur as a side-effect from Parkinson’s medications). A bridesmaid was requesting that Janice allow photos to be taken of herself. Janice not only expressed her desire not to have her photo taken but spent the rest of the time avoiding the camera instead of enjoying the moment.
“I think sometimes people don’t realize that just because they don’t care that you have it doesn’t mean you don’t care that you have it and are looking different,” she says.
Experiences like this increased Janice’s self-stigma until she decided to challenge it. “To come out of that anger and isolation, I had to accept and like who I am. Trying to help others do the same makes a big difference for me, too,” she explained.
Being an artist, she decided to channel her internalized stigma into her art as a form of therapy but also to begin educating others about Parkinson’s.
“That has really helped me figure out how to grow through the initial anger and response to stigma,” Janice says.
She adds that Parkinson’s pushed her to do more with her artistic abilities. “I didn’t believe I could do anything with it,” she admits. “I didn’t think people would respond to it. So that’s been quite a journey of its own since then.”
Now, 15 years into her diagnosis, Janice rests in a place of self-compassion and reflects on how much she has accomplished not only in her advocacy efforts for Parkinson’s, but how much personal growth came from receiving such a difficult diagnosis. From zip lining, to traveling, enjoying time with her children, leading art therapy sessions, sharing about Parkinson’s and Deep Brain Stimulation on CBC News and more, Janice has rediscovered what living well feels like.
“I have surprised myself,” she says. “Since I was diagnosed with Parkinson’s I’ve done so much more than I ever thought I would do even in a “regular” life, never mind one with Parkinson’s.”
With that, Janice imparted some advice for others facing internalized stigma:
“Don’t think you have to stop your life just because someone might see you and think you look weird. Don’t let stigma stop you from being who you are and doing what you want to do. You can’t care. People are judging everyone all the time no matter what, it’s just the way we are, and it has to roll off you like water rolls off a duck!”
Dr. Soania Mathur: Emotional acceptance versus intellectual acceptance
Sometimes it doesn’t matter how much you know about Parkinson’s before you receive the diagnosis. The news can still lead to a deep internalized stigma. Such is the case for Dr. Soania Mathur.
Soania, who received a EOPD diagnosis years into an established career practicing medicine, was heavily impacted by the news of her Parkinson’s diagnosis, despite being informed about it. “I felt very angry at first,” Soania shares. “I wanted to push it to the side and not think about it. There were feelings of anger, denial and secrecy for me.”
Back then, being informed about it meant understanding Parkinson’s as a movement disorder with physical motor symptoms. The non-motor symptoms were something new to Soania altogether. Fears such as what might happen to her career if she disclosed her diagnosis, or how her family and friends might treat her if they knew, plagued Soania and led to serious depression and anxiety for upwards of 10 years.
“But then I began to realize it was changing me as a person,” says Soania. “I had these three young beautiful daughters and everything to be happy about. But I didn’t feel happy – that glass was always half empty. I realized I had medically and intellectually accepted the diagnosis but not emotionally. You get to a point where you have to make a choice because the Parkinson’s isn’t going to go away.”
Soania’s daughter Neha, who is also pursuing a career in medicine, has been part of the Parkinson’s community for as long as she can remember. Watching her mother overcome depression and step into Parkinson’s advocacy gave Neha a sense of purpose. “Having a mom with EOPD made my sisters and I stronger in terms of our advocacy, generosity and will to help others,” Neha says admiringly, “Especially because our mom exemplified those characteristics about her diagnosis as well.”
Neha and her research team recently published a study of non-pharmacological approaches to Parkinson’s symptom management. Within it there is an emphasis on therapies that help combat non-motor symptoms like depression and anxiety.
“Because Parkinson’s has been known primarily as a movement disorder for so long, it’s going to take even more of a push for acceptance to recognize that the mental health and non-motor symptoms often impact quality of life even more than movement symptoms,” Neha explains.
One such therapy Neha’s research article touches on is Cognitive Behavioural Therapy (CBT).
At the crux of CBT is challenging yourself to see if your anxieties play out in actuality. For people with Parkinson’s this means breaking the cycle of isolation and secrecy that keeps you home for fear of being stigmatized by strangers, friends or family. When CBT is done alongside a trusted professional, you begin to learn that:
- Oftentimes, what you thought would be the reactions of family and friends learning you have Parkinson’s, isn’t how they actually react. Seeing those thoughts proven false is incredibly impactful for overcoming internalized stigma which is often the culprit behind the decision to isolate oneself.
- Slowly but surely, if you experience situations where you’re stigmatized by strangers who are ignorant to the symptoms of Parkinson’s, you develop a self-compassion that reminds you their opinions of you don’t matter. From there, a compassion for others who judge you emerges and you find teachable moments for others where you once only felt the sting of social stigma.
Many years before Neha’s research confirmed the usefulness of approaches like CBT, Soania learned first-hand that the negative internal voices can be challenged. She recalls fearing the reactions of her family, friends and coworkers, but after disclosing her diagnosis those fears dissipated as Soania found only support and love.
“Once the internal acceptance happened, that’s when I began turning outwards and educating people and speaking up for members of my own community,” she explains. “For some it can happen quickly. They can reframe their experience with Parkinson’s and begin that process. For others like me, we’re slow learners and it takes us a few more years to get to that point.”
Soania’s advocacy and education efforts have blossomed over the past decade. She believes all forms of stigma need to be combated through education. “Both educating yourself about your own disease and educating others on it as well,” Soania says.
She uses the platform she created with UnshakableMD to support Canadians impacted by Parkinson’s, and recently co-founded PD Avengers, a self-funded global alliance of Parkinson’s advocates dedicated to unifying the global PD community.
Alice Templin: Moments of self-stigma leave lasting effects
When Alice Templin received her diagnosis 22 years ago, she took the news fairly well. Her work in neuro-physiotherapy gave her the pleasure of working with clients with Parkinson’s and she knew many exercises that could help manage the motor-symptoms. The self-stigma, however, still creeps up in unsuspecting moments.
These moments are far and few in between for Alice, but when they occur, the effects linger and can be recalled even years later. One occasion was during a trip to Australia to visit her son. She and her husband knew the trip would present its challenges, so they made arrangements for Alice to have access to assistive devices at the airport. Despite knowing that wheelchairs are there to improve quality of life and maintain a sense of independence and mobility, Alice could only see using the airport’s wheelchair as negative. “I absolutely hated being in it,” says Alice. I felt so diminished, dependent and even like a fraud because I didn’t look like I needed a wheelchair. It’s interesting how I knew, rationally, that wheelchairs increase mobility, but the emotions were the opposite. I was surprised by the intensity that.”
Until she was faced with using one – especially publicly – she couldn’t have described the impact it has on a person. “Physically you’re lower than other people when you’re sitting in a wheelchair and they’re all talking above you,” Alice reflects. “I felt sad and fearful of a time where wheelchair use would be an everyday thing. And I felt a little bit like I was letting myself down because I couldn’t manage without the chair at that point.”
Alice is able to recognize this power of self-stigma. At no point did anyone openly cast judgement or purposely stigmatize her when she was in the wheelchair. It was she who was so hard on herself.
“Self-stigma tricks us into believing certain things about ourselves,” she says. “Despite our logic and understanding that the thoughts are false, that doesn’t make them feel any less real.”
After that experience, Alice recalls feeling a sense of urgency to communicate with others about it. She felt others should mentally prepare themselves before needing to use wheelchairs to help challenge the feelings of diminishment and dependency that can sneak up. “I thought if I felt this way, I figured someone else might as well,” she said.
Alice also shared that during her 22 years of experience with Parkinson’s, she has discovered a global community that helps her feel supported. Alice very much agrees with Dr. Soania Mathur and Janice Horn on the importance of self-compassion and how it eventually flows into compassion for others, all from a place of education. For Alice, much of that education comes from learning how Parkinson’s is perceived differently around the world through the numerous volunteer roles she’s held.
She says, “As your network grows, the way you move through the world changes, the way you speak to yourself changes, and the impact that others who stigmatize you also begins to change.”
When asked to offer advice to people struggling with internalized stigma, Alice offers this response:
“It’s hard to give advice when people are experiencing things that you’re not experiencing yourself. In general, I would say the more you know about your condition, the more ownership you have of it and the more you can find the teachable moments when you encounter someone stigmatizing you. That’s how you’re going to keep that sense of positive self-esteem and self-value.”
The battle to end internalized stigma
Communication is the key to releasing the judgement we place on ourselves. When we share how stigma impacts the way we live our lives, we begin to loosen the hold it has on us.
Looking for a support group to talk through your self-stigma? Find one in your area.
Want more on stigma? Here are blogs that cover the two other forms of stigma impacting people with Parkinson’s: