Monday, February 14, 2011

Stigma Against People with Diseases of the Brain

This image shows the beauty of the human brain.
I wish everyone saw the brain in this way.
The more time I spend with Mom and in the company of others with dementia, the more I feel for how the stigma against their disease affects their care, how other’s treat them, and their self esteem. The stigma against dementia has created a society that sees people with this disease as scary, annoying, unintelligent, weird, unpredictable, and embarrassing.

At a deep level, I can understand just how painful it is for people with dementia to be stigmatized. I have been treated the same way by society because I have bi-polar disorder, ADD, and a panic disorder. This specific kind of stigmatization seems to be prevalent with any kind of disorder/disease of the brain, whether it be dementia, Alzheimer’s, or any mental illness. I have heard that this kind of stigma is also common for people with developmental disabilities, but I can not speak to that as I do not have personal experience with it.

This stigmatization is so frustrating to me. I can say, from my experience, when people treat you like you are inhuman, as scary, annoying, and unreliable, you see yourself as inhuman. You do not feel that you have any worth and dignity. This causes extremely low self esteem, it causes many people not to get treatment because they do not want anyone to know they have a disease of the brain, and sometimes it causes one to feel as if life is not worth living.

As soon as I tell someone I am bipolar, many assumptions run through their mind, and some of those assumptions I can see on their face. The shock, the embarrassment, the disgust. I have been this way since I was six years old and I have tried to hide it almost my whole life because I could not stand the way people treated me when they found out about my illness. I can barely get life insurance because of my bipolar label and the apparent risk I present, even though I have no history of suicide or hospitalization. People seem to fear that I will embarrass them or do something “crazy.”

I am not exactly sure where this stigma comes from. Is it because we only hear news stories of people with these illnesses who have done scary or outrageous things? Is it because, for mental illness at least, it was often assumed that if a person was just more in control of themselves and took more responsibility for themselves that they would be fine? In other words, mental illness is your own fault, not a real illness?

It is very likely that you come into contact with at least a few people every day with some form of a brain disorder, and you would never know it. People say all time that they can’t tell my Mom has dementia. Most people do not know I have mental illness.

What I wish is that more people talked about these diseases of the brain. That we saw how slight changes in our society can make it much easier for people like me and my mom to live successfully and contribute positively to the world. I wish people understood that we do not chose to be this way. My mom did not chose or do anything to cause her dementia. She is not slow, forgetful, or easily annoyed because she wants to be. I did not chose to be afraid to leave my house, have mood swings, or be unable to keep things organized. Trust me, no one wants to live this way. It makes everything a million times harder and it means your life centers around managing your illness first before you can do anything else. But by far, one of the worst thing about such diseases is that other people treat you like you are, well, a freak.

What I wish is that society saw us as human.

It is possible to end these stigmas and welcome people like Mom and me into society. I see this every day in many of the Unitarian Universalist churches I have attended and served. The Unitarian Universalist faith was the group who said I was human, I have inherent worth and dignity, and I am welcome. They say the same thing to my mom. Our communities are still learning how to be truly welcoming to people with all sorts of brain disorders, but the progress we have made is immense and a great inspiration to me.

Please be aware of the stigma and the ways in which each one of us contributes to it. Let’s talk about it and find ways to overcome it so more people can manage their illness and we can help them live meaningful lives.


Rev. Katie


  1. Thank you for sharing this, Katie. I think part of the stigma is just the so much that's unknown - and also that many people don't reflect on the many gifts and challenges of what it means to be human. I trained as a hospice volunteer and the first patient I was assigned to had severe dementia and/or Alzheimer's - and it broke my heart how she was treated by her family. I had no doubt that she was somehow aware of and felt the stigmatization. I made an extra effort to be patient with her, be kind and concerned... I was pleased that it made some difference in how she was treated by her family - a little improvement. But it is hard - and it breaks my heart when people act the way they do with others who they perceive to be somehow different then themselves. Having not known her before her condition got so bad, I wondered then as I sometimes do now, what her life had been like, what she would have thought if she'd known that her life would take the turn it had, etc. It's sobering and can help remind others that we are all human... Thank you for sharing. :)

  2. Sweet Pea,
    Thanks for your comment. I am sure your patient felt that you cared about her- what a gift you gave to her. My Mom is fully aware of the stigma and has said "No one wants me." That is heart breaking. I am thankful for people like you who see people in their full humanity and care for them.

    Rev. Katie