By Mary Beth Wighton, Person diagnosed with dementia, Chair of the Ontario Dementia Advisory Group and member of Dementia Alliance International. First published: July 2nd 2015. Thank you Mary Beth forgiving us permission to share your experience here.
When I say I have dementia, there is usually a stigmatized response: “Gee you don’t look sick.” “You are too young to have dementia.” “I’m not good at math either.” “Everyone gets forgetful.”
What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don’t believe I have a disease that has no cure and ultimately will die from. One such person said that I “…can walk and talk so I’m fine.”
What else do I need to do in order for all people to believe me?
Perhaps the better question is why do I feel the need to convince them? And why am I disappointed, hurt and sometimes angry with them that they don’t?
Rest assured I have received a diagnosis of probable Frontemporal dementia. I have been through the gamete in seeing doctors, tests, and been under high-scrutiny. My brain has been picked and prodded at. I’m so sick of it, that I have told Dawn I’m done with doctors and don’t want to see and more. I will do the basic requirements necessary for me to retain my personal insurance. That most likely means a yearly visit to the world renowned brain hospital Baycrest to see the Head, Division of Neurology, Dr. Morris Freedman.
I’m reminded of the apostle “Doubting Thomas” who refused to believe that the resurrected Jesus had appeared to the other apostles until he could see and feel the wounds of Jesus.
Skeptic, why do you not believe I have dementia?
I am unable to show you my diseased neurons that are not firing on all cylinders. I am not alone in this as most people having dementia experience this stigma. I am fortunate in that I have an early diagnosis. This has enabled me to have the time and ability to learn about my diagnosis and prepare accordingly.
Dementia does not mean: I am old and always forgetful.
• am a person
• have a diagnosis of dementia
• have great long-term memory
• struggle with short-term memory
• struggle with making decisions
• struggle with math
• struggle with understanding humour
• struggle with understanding complex movies
• struggle with word finding
• am not as compassionate to others as I once was,
• take a great deal of medication that makes me tired (not lazy), and
• I am loved by many.
Reader, take the time to understand dementia. It doesn’t take long. Educate yourself. I would hate to think that you too are a skeptic.