Can you tell us about one of the single worst moments with bipolar?
Linea: I think the feeling to want to end my life was the worst. It was a constant soul-sucking feeling that I couldn’t stand one more minute of life for about two straight weeks. I felt completely out of control of my body and mind and had to have a one-on-one in the hospital with someone watching my every move.
Cinda: Mine, too, was when Linea was suicidal and the diagnosis was new, we didn’t know the system or what to expect. We weren’t familiar with the illness, and we were scared to death. We didn’t yet have a support system, we were still all in shock about how quickly her illness had taken her away from us, and we felt very alone.
How has this illness affected your relationship with each other?
Linea: This illness has made us so much closer. We were always close, but the level of honesty and trust that we have now would never have come without the struggles we have been through. I tell my mom most everything and know that she will listening honestly and openly.
Cinda: Not only are we closer, but I am so in awe of Linea’s strength. I learn from her every day and I trust her to take care of herself. I know how much she wants to live in recovery. I believe this has developed because of our honesty, sometimes painfully so, but the cornerstone of our relationship.
Linea, how are you coping now? What symptoms do you still experience and how do you manage them?
I am doing really well at the moment. In the last three months I have had both a major depression and a hypo manic episode, but both have taught me that I am in more control than I think. Through treatment such as electro convulsive therapy, or shock therapy, medication and cognitive behavior therapy I haven’t felt this good in years.
Do you think it’s harder as a child or an adult with bipolar?
Linea: I think it is harder as a child because not only are you trying to diagnose all of these scary out-of-control feelings, but you are also surrounded by immature peers that just can’t grasp the devastation and instability that comes with the illness. I think the worst time is right before you are diagnosed and right in the beginning of finding the right treatments, medications, counselor, doctors, etc. Once you mature and learn more about your illness, you can find more stability by learning what works and doesn’t work for you and your life. Though there is still stigma with adults, there is more understanding because people have had more experience with mental health in the community than children have.
Cinda: The most important thing in my opinion is that it is much harder on the person living with bipolar disorder than for anyone else. As a parent I know how difficult and frightening it can be and I know how hard it is for families and friends. But ultimately, the person living with bipolar disorder is affected the most and is the bravest, the wisest and must be provided the skills and resources to manage their own life.
What are the most common misconceptions about the illness that you want to clear up?
Linea: I think the most common misconceptions are the idea that people living with mental illness can’t live well with it or can’t accomplish big things in their lives. There are millions of people living well with mental illnesses doing amazing things. Kay Redfield Jamison said it best when she said that people living well with mental illness don’t have to talk about it. Our idea of people with mental illness are those unstable individuals who need the most help or live on the streets.
Cinda: I would add that there are still people out there who think that bipolar disorder is a behavioral issue rather than a brain disorder. There are still people who believe that somehow a parent caused the behaviors and that it is something that can be fixed with “behavior management.” Bipolar disorder does affect behaviors, true, but it is a brain-based illness and not due to poor parenting or an individual’s lack of moral standards, or laziness or being given too much or too little. Bipolar disorder crosses all ethnic, racial, cultural, socio-economic, educational and intellectual lines. A person with bipolar is luckier if her or his life is stable, their health and intellect are intact and there is a supportive family. Then their outcomes might perhaps be more positive than a person who does not have these things in place, but bipolar doesn’t discriminate. I think our job as a community is to assure that people with mental illness receive the health care they need so that they can live productive and healthy lives.
Anything else you want people to know about bipolar and how to help a family member or friend who may have it?
Linea: Bipolar isn’t just a happy and sad disease–there are lots of different ways it manifests itself. Educate yourself about what different symptoms are whether it is anxiety, rapid cycling, mixed episodes or rage. Also know that there is hope for people living with bipolar disorder. There is treatment, though it may be hard to find, and it can get better.
Cinda: I agree. The more that you know the better it is. Also, have a talk with the person living with bipolar disorder about what he or she wants you to do if they should become ill. Assure that you have a medical and psychiatric directive on file. Talk about insurance and permission to help out if needed. Have a plan in place before someone might become ill. Develop trust through honesty.
Linea Johnson is a recent graduate from Seattle University, with a major in English and Creative Writing. Prior to transferring to SU, she completed three years at Columbia University, Chicago, in a musical performance program. Linea is currently working as a research assistant at Harborview Medical Center in Seattle, WA – the very same center where she was treated for bipolar disorder. Previously, she worked as an intern at the World Health Organization in the Mental Health department. She is a national speaker and writer, advocating for understanding and support for people with mental illness and the elimination of stigma. She has worked and presented with national leaders at BringChange2Mind, NAMI and One Mind for Research. Follow her site where she writes about and advocates for mental health.
Cinda Johnson, PH.D., is a professor and director of the special education graduate program at Seattle University. She is also the principal investigator and director of the Center for Change in Transition Services (http://www.seattleu.edu/ccts). She is a national leader in the area of transition from high school to post-high school settings for young people with disabilities. She has written articles and book chapters in the area of secondary special education and transition services with an emphasis on youth with emotional and behavioral disorders and mental illness. She has worked and presented with national leaders at BringChange2Mind, NAMI and One Mind for Research.
Photo: courtesy of Linea and Cinda Johnson