By Anonymous contributor
Thinking back to 2005 I see myself holding my breath and living each day and night in anticipation of the next dramatic event in my son’s life. I still see the doctor’s diagnosis scrawled on a piece of paper and handed to me in the waiting room of the local hosital’s emergency room: bipolar disease. My brilliant son had just been branded for life.
I didn’t have a firm understanding of the illness. Education became my constant companion. I contacted the biggest agency I could think of: the National Institute for Mental Health, seeking help and understanding. I simply called and left a voice message with the highest-level official I could find listed in the directory. Amazingly, someone called me back within a day. At the same time, I reached out to American psychologist, Kay Redfield Jamison, whose book http://Touched with Fire: Manic-Depressive Illness and the Artistic Temperament became my go-to book for understanding bipolar illness, also known as manic depression. The book describes Jamison’s experience of her own bipolar diagnosis. It was both frightening and inspirational. I wrote a letter to the author, asking for more resources. Within a short time, I received a reading list and encouragement from her. I began to read everything available and learned more and more about medications and behavioral therapy. I also researched support resources for sufferers of bipolar disorder and their families.
Coping strategy number one: educate yourself
The treatment for this illness has changed tremendously in the past 16 years with a wider variety of medications and therapy techniques now available.
The medical model of the illness comforted me. Just as there is no shame in illnesses such as diabetes or cancer, there should be no shame or stigma for sufferers of mental illness. Both the afflicted person and the family can focus on the medical management of illness including medication, healthy life-style choices and talk therapy.
As my own understanding of the illness increased, I began to listen to sufferers who were plagued with anxiety and doubt as to the ability of other family members to continue to love them. I reached out to people to hear their stories and saw a lot of self-stigmatization, much self-loathing, much substance abuse, and most of all great fear of the more distressing features of illness: losing control, acting out sexually, spending sprees and odd behavior during the manic phases; then the bottomless pit of depression that seemed to me to be the most dangerous aspect. My son was intermittently plagued with suicidal thoughts that he later told me were linked to his horror of having to live with this exhausting illness. Fortunately, he is still alive and mostly thriving in his life; many others die of suicide.
I reached out to NAMI (National Alliance for Mental Illness) through their local chapter in Illinois. As a resident of a county near Chicago, Illinois, I had access to not only the support of the NAMI but also county health department resources including doctors, medication expense assistance, and a Crisis Center where sufferers could check into a safe and supervised facility when they needed a break but did not necessarily require hospitalization to rest and recoup. I was lucky in that the mental health resources in my area were in place. I am forever grateful for the assistance.
I attended family support groups sponsored by NAMI and met many parents and siblings of bipolar family members. There was a specific group for that illness and I began to learn the ropes from not only books and medical professionals, but from friends and families of sufferers. I felt less alone and picked up vital tips on how to apply for Social Security Disability or affordable medical care. I learned about the lobbying focus of NAMI in the state legislature to improve the laws that play into care for individuals. I learned about the Treatment Advocacy Center in Arlington VA, a not-for-profit organization that has been influential in advocating for changes in the laws that allow family members to seek medical help/hospitalization/medication even when the sufferer is resistant to help. Illinois laws changed substantially during the time I was learning more about the work of the Treatment Advocacy Center. I am so grateful for their work.
NAMI has led the effort to support families, offering nine-week sessions of once-weekly meetings; these sessions teach the preferred and effective methods of assisting loved ones who suffer. The period right after first diagnosis is a bewildering time, especially for those who have had no prior experience with the behaviors triggered by the onset of illness. On a regular basis, NAMI trains volunteers from interested families to assist in educating new members. It is an invaluable service.
Coping strategy number two: seek out NAMI meetings and get involved.
It helps a lot to take action. It is taking back control to some extent when one feels completely helpless as to what to do.
I found self-care can go out the window when one’s familiar life is disrupted by mental illness. I began sleeping poorly and eating badly due to the the stress and constant worry for my son. As you’d imagine, letting my own self-care slide, didn’t help anyone. Coping requires the internal strength to be present and helpful day after day, week after week. That requires physical strength and stamina. I began taking the steps necessary to be physically fit enough to assist my son and now recognize how essential exercise and healthy eating are for maintaining a positive outlook that is effective in relating to others. Many families are strained to the breaking point in the face of the care needed for their sickest members.
Coping strategy number three: stay healthy. Stay strong. Take time for yourself so you can be as strong as possible to support your loved ones.
Recognize the great stress that has entered the family life and do what you can to fight it. Long walks or any physical activity you enjoy should be a top priority. A massage, a positive outlook, and looking for humor in movies or books will help to prevent the sorrow and distress from getting the upper hand.
Mental illness is devastating. To stay strong, sufferers as well as their friends and family, require all the tools in the kit. The foundation for me was education, a sympathetic network, accessible local support agencies, and staying as strong and healthy as I could. What was devastating at the onset became familiar territory over the years. It became manageable. For some, I imagine a strong religion or spiritual belief is helpful. Of course there is room for all of these coping techniques and others, such as: toughness, discipline, creative expression and willingness to share stories. This forum, sharing through Ordinary Overcoming, has given me that opening.
Getting my thoughts and worries on paper, then in digital form, helped me gain perspective. I had not taken the time to pinpoint what happened over the last fifteen years and how it affected me. Sharing with the readers of this blog helped me to articulate what did help me to cope and has added another tool to my own kit for future skills needed to face the ordinary challenges of mental illness. Thanks for reading my story. If I have helped anyone I am glad. Please share your own story and be proud of taking control. Pay it forward. Truly, you can make a difference in this complicated world.
Note the happy ending: After years of management my son has made himself a good life. He married someone he loves, has had career success, and is applying his own experience with bipolar disorder to help many others.