Janice Horn was diagnosed with early-onset Parkinson\u2019s at the age of 39. For her, internalized stigma was a huge hurdle. \u201cIt\u2019s fighting your own inner critic,\u201d she shares. Her internal talk told her this diagnosis meant she wasn\u2019t going to be who she thought she was in this life which fostered a worsening depression.<\/span>\u00a0<\/span><\/p>\n N<\/span>ot 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.\u00a0<\/span>\u00a0<\/span><\/p>\n \u201cI think sometimes people don\u2019t realize that just because they don\u2019t care that you have it doesn’t mean you don\u2019t care that you have it and are looking different,\u201d she<\/span> says.\u00a0<\/span>\u00a0<\/span><\/p>\n Experiences like this increased Janice\u2019s self-stigma until she decided to challenge it. <\/span>\u201cTo 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,\u201d she explained. <\/span>\u00a0<\/span><\/p>\n 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\u2019s. <\/span>\u00a0<\/span><\/p>\n \u201cThat has really helped me figure out how to grow through the initial anger and response to stigma,\u201d Janice says.<\/span>\u00a0<\/span><\/p>\n She adds that Parkinson\u2019s pushed her to do more with her artistic abilities. \u201cI didn\u2019t believe I could do anything with it,\u201d she admits. \u201cI didn\u2019t think people would respond to it. So that\u2019s been quite a journey of its own since then.\u201d<\/span>\u00a0<\/span><\/p>\n 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\u2019s, but how much personal growth came from receiving such a difficult diagnosis. From <\/span>zip lining, to traveling, enjoying time with her children, leading art therapy sessions, <\/span>sharing about Parkinson\u2019s and Deep Brain Stimulation on CBC News<\/span><\/a> and more, Janice has rediscovered what living well feels like. <\/span>\u00a0<\/span><\/p>\n \u201cI have surprised myself,\u201d she says. \u201c<\/span>Since I was diagnosed with Parkinson’s I\u2019ve done so much more than I ever thought I would do even in a \u201cregular\u201d life, never mind one with Parkinson\u2019s<\/span>.\u201d\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n With that, Janice imparted some advice for others facing internalized stigma:\u00a0<\/span>\u00a0<\/span><\/p>\n \u201cDon\u2019t 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\u2019t 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!\u201d<\/span>\u00a0<\/span><\/p>\n Soania, who received a EOPD diagnosis years into an established career practicing medicine, was heavily impacted by the news of her Parkinson\u2019s diagnosis, despite being informed about it. \u201c<\/span>I felt very angry at first,\u201d Soania shares. \u201cI wanted to push it to the side and not think about it. There were feelings of anger, denial and secrecy for me.\u201d<\/span>\u00a0<\/span><\/p>\n Back then, being informed about it meant understanding Parkinson\u2019s 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.\u00a0<\/span>\u00a0<\/span><\/p>\n \u201cBut then I began to realize it was changing me as a person,\u201d says Soania. \u201cI had these three young beautiful daughters and everything to be happy about. But I didn\u2019t feel happy \u2013 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\u2019s isn\u2019t going to go away.\u201d<\/span>\u00a0<\/span><\/p>\n Neha and her research team recently published a study of non-pharmacological approaches to Parkinson\u2019s symptom management. Within it there is an emphasis on therapies that help combat non-motor symptoms like depression and anxiety.<\/span>\u00a0<\/span><\/p>\n \u201c<\/span>Because Parkinson\u2019s has been known primarily as a movement disorder for so long, it\u2019s 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,\u201d Neha explains.<\/span>\u00a0<\/span><\/p>\n One such therapy Neha\u2019s research article touches on is Cognitive Behavioural Therapy (CBT).<\/span>\u00a0<\/span><\/p>\n At the crux of CBT is challenging yourself to see if your anxieties play out in actuality. For people with Parkinson\u2019s 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:<\/span>\u00a0<\/span><\/p>\n Many years before Neha\u2019s 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. <\/span>\u00a0<\/span><\/p>\n \u201cOnce the internal acceptance happened, that\u2019s when I began turning outwards and educating people and speaking up for members of my own community,\u201d she explains. \u201cFor some it can happen quickly. They can reframe their experience with Parkinson\u2019s and begin that process. For others like me, we\u2019re slow learners and it takes us a few more years to get to that point.\u201d<\/span>\u00a0<\/span><\/p>\n Soania\u2019s advocacy and education efforts have blossomed over the past decade. She believes a<\/span>ll forms of stigma need to be combated through education. \u201cBoth educating yourself about your own disease and educating others on it as well,\u201d Soania says.<\/span>\u00a0<\/span><\/p>\n She uses the platform she created with <\/span>UnshakableMD<\/span><\/a> to support Canadians impacted by Parkinson\u2019s, and recently co-founded <\/span>PD Avengers<\/span><\/a>, a self-funded global alliance of Parkinson\u2019s advocates dedicated to unifying the global PD community.<\/span><\/p>\n 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\u2019s wheelchair as negative. \u201cI absolutely hated being in it,\u201d says Alice. I felt so diminished, dependent and even like a fraud because I didn\u2019t look like I needed a wheelchair. It\u2019s interesting how I knew, rationally, that wheelchairs increase mobility, but the emotions were the opposite. I was surprised by the intensity that.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n Until she was faced with using one \u2013 especially publicly \u2013 she couldn\u2019t have described the impact it has on a person. \u201cPhysically you’re lower than other people when you\u2019re sitting in a wheelchair and they\u2019re all talking above you,\u201d Alice reflects. \u201cI 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\u2019t manage without the chair at that point.\u201d<\/span>\u00a0<\/span><\/p>\n 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.<\/span>\u00a0<\/span><\/p>\n \u201cSelf-stigma tricks us into believing certain things about ourselves,\u201d she says. \u201cDespite our logic and understanding that the thoughts are false, that doesn\u2019t make them feel any less real.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n 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. \u201cI thought if I felt this way, I figured someone else might as well,\u201d she said.<\/span>\u00a0<\/span><\/p>\n Alice also shared that during her 22 years of experience with Parkinson\u2019s, she has discovered a global community that helps her feel supported.\u00a0 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\u2019s is perceived differently around the world through the numerous volunteer roles she\u2019s held.<\/span>\u00a0<\/span><\/p>\n She says, \u201cAs 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.\u201d<\/span>\u00a0<\/span><\/p>\n When asked to offer advice to people struggling with internalized stigma, Alice offers this response:<\/span>\u00a0<\/span><\/p>\n \u201cIt\u2019s hard to give advice when people are experiencing things that you\u2019re 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\u2019s how you\u2019re going to keep that sense of positive self-esteem and self-value.\u201d\u00a0\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n 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.\u00a0<\/span>\u00a0<\/span><\/p>\n Looking for a support group to talk through your self-stigma? <\/span>Find one in your area<\/span><\/a>.\u00a0<\/span>\u00a0<\/span><\/p>\n Want more on stigma? Here are blogs that cover the two other forms of stigma impacting people with Parkinson’s:<\/span>\u00a0<\/span><\/p>\n![\"\"](\"https:\/\/archiveparkinson.thedev.ca\/wp-content\/uploads\/Janice-Horn-225x300.jpg\")
The way we moved through the world before our lives were impacted by Parkinson\u2019s plays a big role in how we see ourselves afterwards, and how we believe others see us. <\/span>When we encounter something as monumental as a Parkinson\u2019s 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 \u201cdifferent.\u201d\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\nDr. Soania Mathur: Emotional acceptance versus intellectual acceptance<\/span>\u00a0<\/span><\/h3>\n
![\"Woman](\"https:\/\/archiveparkinson.thedev.ca\/wp-content\/uploads\/Soania-Mathur-300x300.jpg\")
Sometimes it doesn\u2019t matter how much you know about Parkinson\u2019s before you receive the diagnosis. The news can still lead to a deep internalized stigma. Such is the case for Dr. Soania Mathur.<\/span>\u00a0<\/span><\/p>\n![\"Woman](\"https:\/\/archiveparkinson.thedev.ca\/wp-content\/uploads\/Neha-Mathur-300x225.jpeg\")
Soania\u2019s daughter Neha, who is also pursuing a career in medicine, has been part of the Parkinson\u2019s community for as long as she can remember. Watching her mother overcome depression and step into Parkinson\u2019s advocacy gave Neha a sense of purpose. \u201cHaving a mom with EOPD made my sisters and I stronger in terms of our advocacy, generosity and will to help others,\u201d Neha says admiringly, \u201cEspecially because our mom exemplified those characteristics about her diagnosis as well.\u201d\u00a0 <\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n\n
Alice Templin: Moments of self-stigma leave lasting effects<\/span>\u00a0<\/span><\/h3>\n
![\"\"](\"https:\/\/archiveparkinson.thedev.ca\/wp-content\/uploads\/Alice-Templin-May-2022-2-300x200.jpg\")
When Alice Templin received her diagnosis 22 years ago, she took the news <\/span>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. <\/span>\u00a0<\/span><\/p>\nThe battle to end internalized stigma <\/span>\u00a0<\/span><\/h3>\n