Rev. Katie and Jeff
Breaking the Silence Part I: Rev. Katie Norris
One out of every three Americans suffer from a mental illness each year. That is 32.4% of our population. The odds are very high that you know and love someone with a mental illness. You work with them and your children are friends with them. It is very likely though you don’t know the majority of them have a mental illness. This is because the stigma against mental illness is high. I can’t tell you the amount of times I have heard people say they would never hire someone who is bipolar, or that depression is fake, or call people with schizophrenia a freak. This happens in every kind of setting I have been in. Parties, workplaces, schools, even in our churches.
One time at a seminar at General Assembly, which focused on using social media in churches, a fellow minister said he did not want to start a Facebook page for his church that allowed people to comment on the page because, and I quote, “there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems.” I was shocked and devastated at the ignorance of this person who is called to uphold the first principle of Unitarian Universalism that says everyone has inherent worth and dignity. I almost turned to him and said “I have bipolar disorder and it sounds like maybe you don’t know enough about it, would you like to talk about it?” But, I was too tired. Some days you pick your battles and that day I just didn’t have it in me, again, to try and defend my inherent worth and dignity as well as the inherent worth and dignity of others with mental illness.
So yes, I have bipolar disorder and a panic disorder and it is an illness I live with like any other chronic illness. I knew I was sick at the age of six, but was not treated until I was nineteen and not correctly diagnosed until I was twenty five. This means that I have the same kind of up and down moods that Eli the bipolar bear from our story has. It also means I have frequent panic attacks. When I was younger I was scared to ever leave my house. Now I live with my panic attacks on a daily basis and just kind of muscle through them because if I didn’t I wouldn't go anywhere or do anything. This has been a long road my family and I have been on, which we still continue to navigate because mental illness is extremely hard to treat.
Many people ask me what it is like to have mental illness, and there is really no good way to describe it. It is hard to come to terms with the fact that you have an illness in your brain which effects your behavior and abilities. For me, often music can explain things better than just plain words can. So I have a song for you from the musical Next to Normal which is about a woman with bipolar disorder and her family. In the song, called "You Don’t Know," she is trying to describe to her husband what it is like to have mental illness and the fact that he really does not know what it is like having not experienced it himself. The words and music speak to the pain and confusion of what mental illness is really like.
Music: "You Don’t Know" from Next to Normal
The biggest struggle in raising awareness about mental illness, is, as the song suggests, most people just don’t know what it is like to have it. People seem to understand physical illnesses, like cancer, diabetes, or a broken arm, because you can easily see or test for these illnesses. Mental illness is not something you can look at like a broken arm, or easily test for. It is an illness that is unseen and comes out in behavior changes more than anything else. Due to this fact, people believe many myths about mental illness and I would like to address a few of those myths today because breaking down those myths means we can truly start to help people.
The first myth is that many people assume mental illness is not real. This is not true, it is a chemical imbalance. While in the past there were no tests for mental illness, they are now finding in brain scans that you can see the difference between a mentally ill brain and the brain of a normal person.
The second myth is that people with mental illness are just lazy, stupid, or mean and should be able to control themselves. It is hard for people to understand why someone can’t control their own behavior at times. Because of this often friends and family of people with mental illness label their loved one as lazy, irresponsible, or mean because of the way they act. However, mental illness means chemicals in your brain make your brain do things you don’t want it to do. We are not trying to be mean, we are not lazy, or stupid. We want to be well just as much as you want us to be well. This is probably one of the hardest things for people to understand and have compassion around and Jeff will speak about this a little later as this is one of the biggest struggles for family members.
The third myth is that if we just take medication, we get better. Science has not really perfected treating mental illness and for many of us the medications do not work well enough or are so toxic that the side effects mean you have to stop taking them. Or the medication takes all of your personality and life away leaving you empty and cold. Medication is not an easy fix so one way to help someone with mental illness is to understand their struggles with medication and not judge and yell at them for not taking it. Also, there are many lifestyle changes which are just as important as medication which can help treat mental illness, such as exercise, sleep, spiritual practice, and diet. We can help people maintain those changes by being understanding of the restrictions this puts on their lives instead of making fun of them for it or insisting they don’t need to do it.
The fourth myth is that people with mental illness can not be productive members of society. People assume we can’t have families, hold down a job, and our opinions don’t matter. In October of last year, an article came out in the New York Times which showed how work is often an effective way of managing your illness as was told in the story of a woman who has scizoeffective disorder but also holds a high profile executive job. Her job gave her meaning and purpose in life, all she needed was the ability, when her illness got bad, to have some time off or even bring her therapy dog into work with her. Research now shows that people with mental illness are often good at very demanding jobs because we understand crisis and urgency better than most people. If our society could be more understanding about these illnesses and give people more flexibility in their jobs, we could lessen the amount of times people end up hospitalized. Unfortunately, as for many illnesses, it is hard to get this kind of understanding in the workplace. This is something we need to work for in all areas of health and wellness.
The fifth myth is that children can not get mental illness. Mental illness can happen to anyone at any age and we can not just assume that repeated behavioral issues with a child are just because of a spoiled, ungrateful child. We don’t want to over or misdiagnose kids, but we do need to pay attention when kids are exhibiting serious problems. I can tell you from experience it is devastating as a child to have mental illness and let it go untreated as it makes life agonizing, confusing, and you often feel like a bad person. Adults and children alike make fun of you and judge you for being different. That is one of the reasons I think our faith is so essential to our children who may have mental illness. We teach that they are loved just as they are and we will work with them to create environments which help them thrive. That is why we try to have religious education that is accessible to all learning and mental abilities. This faith will save those children from living in a culture that says they are bad and wrong for having an illness. We are the loving and salvific voice to those kids, and even adults, as that is what I heard in a Unitarian Universalist Church when I was twenty-five. This faith told me I was loved and they believed in me as a whole person, which meant I was able to do many valuable things with my life.
This leads me to the sixth myth I want to address, that we as a society and community can not help people with mental illness. People often say that people with mental illness can’t change and what we do does not affect them so we should just leave them be and let them suffer the consequences of their illness alone. In reality, the best way for someone to manage their illness is to have a large supportive community around them. People who help them keep up with their treatment plan. People who call and check on them to see how they are doing. An understanding work environment, and people who also help check in on family members as well.
This can be a fatal illness for some of us but the more we raise awareness and create a supportive community, the less likely that is to happen. And when it does happen, we need to be the ones to support the families and friends during such a difficult time. If we don’t understand the illness, we can’t adequately help them process what happened.
Most importantly we as a church community can help by making sure that people have a faith which is realistic about what mental illness is, which brings me to the last myth. Sadly many faiths promote the myth that mental illness is actually evil spirits that take over a person, or a person only gets mental illness if they have been bad and need some form of punishment. As Unitarian Universalists, those teachings go against everything we stand for, so instead we can be the faith that says we understand. We can be the faith that welcomes people with mental illness into our communities and gives them volunteer opportunities which speak to their heart and soul. We can be the communities that help people find nourishing spiritual practices, which are proven to help in the management of mental illness. We can be the community that does not stigmatize and judge. We can be the faith that creates a larger support system not just for the person with mental illness but for their family as well. We have a chance, in our churches to help end the pain that comes from the stigma of mental illness, if we just seek to understand it better.
This is what I, as a person with mental illness wanted to let you all know, the truth about these diseases. Another truth about it is that mental illness, as with all illnesses, affects the family in a very deep way. It is often most hard for family members to understand what is going on and discover ways to help. My husband Jeff is here today to share some of that experience with you.
|Katie & Jeff|
I’ve known Katie since she was 16 years old. She was always a little emotional. When we first started dating, we would spend hours talking about whatever was going on in her life. We discussed the play-by-play analysis of the soap opera that is high school. I never really thought that this was different than what anyone else went through.
Fast forward 5 years, and we had just graduated from college, gotten married, moved, started a new job, and I started graduate school. It was almost like we were trying to squeeze as many stressful events as possible into a single summer. We were living in upstate New York, about 8 hours away from family, and Katie was struggling with her own identity, while I was busy working.
Katie was seeing a doctor for depression, and we were constantly fighting about how to share work around the house. It was not unusual for us to be up fighting until 2 AM about who should be doing the laundry or sorting the mail. I was mad because I had to do what I thought was more than my fair share of the chores. I hated that I always had to be the one to pickup the slack.
Looking back, I really didn’t get it. I found myself falling into the trap of calling Katie lazy, because I didn’t have enough awareness of what was really going on. I couldn’t see that her limits were not my limits, and that fighting about those limits only made our relationship worse. I should have been supportive and helped Katie to work from where she was, but instead I fed into the disease and actually made things worse by fighting with her and making her feel guilty about what she couldn’t handle doing. Our relationship could have fallen apart back then because I didn’t know how to handle the disease.
Fast forward another 5 years, just after our son was born, we figured out that Katie’s illness was not depression, but bipolar disorder, which is the combination of depression and mania. For the last decade, we had been ignoring half of Katie’s symptoms. I had no idea that being overly productive and not needing very much sleep was actually a problem, and a sign of an impending crash. Once I had a better understanding of what was really going on, there were things that I could do to help make things better.
I think of helping someone with mental illness as being analogous to driving a car.
First you need to point the car in the right direction. For us, that means taking the proper medications, getting enough sleep, eating right, spiritual practice, and exercising. For others, it can include meditation and massages.
Second, you need to plan where you are going. For us, this means thinking about major events that are coming up like family activities, travel, stressful work, or even changes in the seasons. We need to make sure that we are not over booked and that we have a plan to get through the events. Sometimes it means saying no to things that we might have otherwise done.
Third, you need to pay attention to where the car is actually going. For us, that means watching for signs that things are starting to go badly. Some of those signs include staying up late, empty candy wrappers appearing around the house or starting dramatic projects like reorganizing her office. Each person has slightly different signs, so it is important to understand how your friend or loved one responds.
Finally, you need to carefully steer the car back to the center as soon as you notice that you are going astray. For us, that can mean a doctor’s visit, increasing dosage of medication, or something as simple as taking a walk. For others, it can mean a trip to emergency room or a stay in the psychiatric hospital.
Just like driving a car, managing a mental illness requires making constant small changes and periodically following some pretty complicated detours. I know that since I am traveling though life with someone with a mental illness, our journey will not be as simple and straightforward as it could be. I also know that my life is richer because we are traveling together.
Breaking the Silence Conclusion: Rev. Katie Norris
The last thing I want to say is that mental illness is not all bad. My illness makes me who I am and I appreciate that. There has been a lot of research done lately on the positive sides of mental illness. Dr. Nassir Ghaemi says depression enhances empathy and realism, and mania enhances creativity and resilience. They are continually finding more positive sides to these illnesses and newer and better treatment options, which means there is always hope. If we can create supportive communities and advocate for better research and end the stigma, the future can look bright for people with mental illness. May this be what we work for in our churches and communities as this allows us to live out our first principle that says everyone has inherent worth and dignity.