My Second Blog: Bipolar Spirit

I have written a few posts on this blog that address the issue of mental illness. I was surprised that I received quite a few comments and personal emails about those posts, either from others with bipolar or from loved ones who are their caregivers. I found that there are many people who are looking for support around the issue of mental illness.

Like dementia, mental illness affects the whole family. It is also an illness that, for most people, is not curable and medications do not always work. It is manageable though, and like dementia takes a lot of trial and error to discover how the patient can have the best quality of life possible.


So, I have started an additional blog, Bipolar Spirit, about mental illness and the spirit. I believe mental illness is a chemical imbalance and also a spiritual issue because of the interconnection between mind and spirit.

I will continue Moving In With Dementia and I am so grateful for how many of you read this blog and contribute to the care of people with dementia. I look forward to the future of both blogs and how we as a community can help combat these illnesses which we can't fix, but can manage.

I would also like to let you know that you can now receive email updates about my blog. You will find the email signup on the right side of each blog.

Blessings,

Rev. Katie

See My Humanity, Not Just My Illness

I was talking with a few ministers about social media, such as Facebook, at General Assembly (GA) 2011 yesterday. One minister said they did not want a church Facebook page where people can post to it because "there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems."


This is not the first time I have heard a comment like this in professional and social settings. In fact, I hear such comments about people with bipolar disorder at least once every few months. They show the enormous stigma against mental illness, particularly bipolar.

I spent all week at GA listening to the stories of our last 50 years since the Unitarians and Universalists joined together so that this faith could be a source of justice in this world. How we were heavily involved in the Civil Rights movement; we protested this week to show support for the gay, lesbian, bisexual and transgendered community; and we have inclusivity ministries. We stand on the side of love and want no one to be discriminated against based on belief, age, race, ability, social class, or sexual orientation. And yet when I mention that this stigma against people with mental illness is unkind and not in line with our faith, many people think I am crazy (and in their minds, technically, I am).

I have sat through chaplaincy trainings focused on how the brain of a bipolar person is unstable and therefor they can not be trusted to be telling the truth or be able to make decisions. I have had people tell me not to let anyone know of my illness because it will affect my career.

I know there are many injustices in our world, and I am just speaking about this one today. What I have found in my experience though is that this injustice is one we do not talk about. Many people do not want to advocate for people with mental illness because they think it will reflect badly on them. No one wants to be associated with "craziness."

Because of this stigma, people with mental illness often don't ask for help, their families are secluded and hurting, their children have no one to talk to, and their illness often progresses.

I never know what to say when people make these judgmental comments about those with mental illness. How do I respectfully tell them how hurtful and degrading it is to know they assume people like me are irresponsible, a risk to society, and not able to contribute to this world just because we have an illness? How do I tell a fellow colleague that Unitarian Universalism is a healing faith for people with mental illness and judgements like this decrease the ministry they can do?

What I wish is that people actually sat down and listened to the stories of people with mental illness instead of just focusing on the symptoms. True, this is a devastating illness that hurts not only the person with bipolar, but also people around them. However, I am able to have a meaningful life because my husband and my home Unitarian Universalist church happened to be people who saw my humanity and said they would help me. They held me accountable and showed they believed in me. They never let me give up on myself and they keep an eye on how I am doing to help me tweak my treatment as necessary.

I feel mental illness is a physical and spiritual illness. The stigma from society, and the internal doubt and questioning this illness brings to a person means they need not only medical support, but spiritual as well in order to manage their illness.

No matter what faith we are, religious or not, we can help end this stigma and allow people with mental illness to be productive members of society when we actually see them as human beings.

Blessings,

Rev. Katie

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.

Blessings,

Rev. Katie