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Parkinson’s Disease and Stigma
Good morning, everyone! For those who don’t know me, my name is Ally and I’m one of the moderators for this forum, alongside Jean Mellano.
By day I work in the mental health field in Toronto, ON, Canada and in my work I often run up against stigma. Although conversation about mental health is becoming more common, there are still folks who don’t know much about mental health and that can make them afraid of people with mental health challenges, or afraid to reach out for help when they themselves are struggling because they’re afraid of being judged or excluded by others.
I was wondering if the same is true for Parkinson’s Disease. As a patient or caregiver, have you experienced stigma about PD? Did you have any preconceived notions about PD before you were diagnosed? How did your diagnosis change your outlook on chronic illness? Are you involved in any work to raise awareness and “normalize” chronic illness? What do you think non-patients could do to help break down the stigma?
Looking forward to hearing everyone’s thoughts. 🙂 Wishing you all a beautiful Tuesday.
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3 Replies
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In 2015, after the suicide of Steve, my life partner, I began a mission to inspire conversation about mental health and suicide through my social media accounts, my blog and the memoir I wrote about Steve. I truly believe that freely talking about stigmatized topics helps break down the stigmas. There was a time no one spoke of HIV/AIDS or cancer as they were stigmatized illnesses as well. Much of the stigma for these diseases no longer exists today. It is my belief that this is because of all the awareness campaigns.
Six months after Steve passed, I was diagnosed with PD. I believe there is a stigma associated with PD. People look at me and say I look fine and no one wants to acknowledge what one with PD may be dealing with. I think they prefer to put their heads in the sand. Since I dont suffer with tremors, I must be “okay”. This is very far from the truth. Every day is a battle to appear normal. I was a dancer and an athlete before my diagnosis, so, I see how much I have lost. So, now I blog about PD as well to raise awareness and to educate people that PD is not just about tremors.
I had a friend who was diagnosed many years ago with PD. I could never understand why she had such difficulty putting on her seat belt… Now I know…
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Jean, you’ve experienced some really difficult things. Thank you for sharing. I really admire you for turning what was certainly an extremely painful experience (Steve’s death) into an opportunity to help others. I’ve only known you a little while but I’m so impressed by your ability to look beyond your own circumstances at the big picture, first with the loss of your partner and now with PD. I’m sure there are countless people who find comfort in what you have to say about both of these topics. Thank you again for being so open about everything.
I wish people could look beyond the surface to try to understand what’s going on with people… a lot of people look “fine” but look a little closer and there is so much more going on. How do you deal with people who don’t “get it”? Or do you just move on?
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It is so true that things are not always as they seem.
When I start to get judgemental, I try to remind myself to walk a mile in someone else’s shoes. It is a good lesson for me, one that I must constantly remind myself of. Hopefully my writing helps educate people that appearances can be misleading.
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