Madness
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Annual direct and indirect costs of bipolar disorder in America: $45 billion
Number of visits to the emergency room between 2000 and 2003 by people whose primary diagnosis was mental illness: four times that of all other emergency room visits
Major reasons for this difference: lack of effective treatments and coordination of care for people with mental illness; inaccessibility of treatments for patients without insurance
Bipolar and schizophrenic people who have no health insurance: 50% (The diagnosis of mental illness makes it far more difficult to get, and keep, insurance, and most insurance plans offer only limited coverage for mental health services and medications.)
Primary cause of a lack of effective treatments: insufficient research funds
Projected breakdown of research funding for the 2008 National Institutes of Health:
Bipolar: estimated at below $250 million (not included in NIH's 2008 report)
Diabetes: slightly over $1 billion
Depression: $334 million
Schizophrenia: $363 million
Other brain disorders (not including Alzheimer's, which receives $642 million): $4.7 billion
My Bipolar Facts
Current medications: Lamictal, Tegretol, Geodon, Wellbutrin, trazodone, Ativan, and a number of supplements that are thought to support mood stability, including a high dose of fish oil and a strong vitamin B-complex
Some habits that help me: a structured schedule, including daily mood charts, keeping a journal, yoga (I'm serious), cardiovascular exercise, meditation, baths, massage, going out of my house and interacting with another human being at least once a day, long periods of sunshine, and, during the winter, my light box. Also, seeing my doctor and therapist frequently, seeing my family and friends several times a week, and, critically, staying sober.
Weekly cost of my meds: around $300, one third of which is out of pocket
My side effects last week: double vision until 2 P.M., dizziness, poor balance, headaches, nausea, digestive problems, low blood sugar, anxiety, shaking hands
Weekly cost of therapy: $217, out of pocket
Cost of psychiatric visits: $300 per session (at least two a month, sometimes more), only partially covered by my three forms of insurance
Cost of my last hospitalization: $45,000 covered by insurance; $10,000 paid out of pocket
Useful Websites
GENERAL INFORMATION
American Academy of Child and Adolescent Psychiatry—aacap.org
American Psychiatric Organization—psych.org
American Psychological Association—apa.org
DIRECTORIES OF LINKS
directory.google.com/Top/Health/Mental_Health/Disorders/Mood/
Bipolar_Disorder—Google's list of websites about bipolar disorder
dmoz.org/Health/Mental_Health/Disorders/Mood/Bipolar_Disorder
—the Open Directory Project's bipolar disorder link list
mentalhealth.com/dis/p20-md02.html—the Internet Mental Health site's comprehensive and helpfully organized list of links to more sites on bipolar disorder
mhselfhelp.org—National Mental Health Consumers' Self-Help Clearinghouse site
psycom.net/depression.central.bipolar.html—list of bipolar links
OTHER SITES
a-silver-lining.org—chat rooms, bulletin boards, articles, newsletter, bookstore, and links to related resources
bipolarchild.com—based on Demitri Papolos's book The Bipolar Child, the site offers a sample IEP (individual education plan), links, a free newsletter, and a FAQ sheet
bipolarworld.net—offers general information on bipolar, message boards, an art gallery, a place to post poetry, and an "ask the doctor" forum
bpchildresearch.org—Juvenile Bipolar Research Foundation (JBRF) is "the first charitable foundation devoted solely to the need for further awareness, education, and research in childhood-onset bipolar disorder." It funds research into the causes, treatments, and prevention of the disease.
bpkids.org—the website of the Child and Adolescent Bipolar Foundation (CABF), a nonprofit that gives a great deal of information to visitors about early-onset forms of the disease
bpso.org—stands for "bipolar significant others." Offers general information and a peer-support mailing list.
citizen.org/eletter/—sponsored by the Public Citizen's Health Research Group and the Treatment Advocacy Center, which do not accept pharmaceutical company support, this site provides up-to-date, unbiased information on medications used to treat bipolar and other psychiatric disorders.
crazymeds.org—a private website run by someone with a mental illness, this site is incredibly helpful. It provides ongoing reviews of a large number of meds, which are written by people who actually take them. The site is informational, gives all the details of what it's like to take the meds and what they do, and gives readers a wide range of experiences from mentally ill people on meds. This is not an official site sponsored by any pharmaceutical company and does not claim to be a scientific resource.
dbsalliance.org—Depression and Bipolar Support Alliance (DBSA) is probably the most comprehensive resource around for individuals with bipolar disorder. It includes information on signs and symptoms; help for people just diagnosed; articles on the latest research; extensive information on all the mood disorders; excellent material about how to get involved with advocacy; suggestions on becoming a peer-group leader or a grassroots organizer; where to go for online support groups and discussion boards; how to contact local DBSA chapters and other support groups in your area; tools for recovery and management; information about how to help a loved one; a bookstore; and more. This is a fantastic site for people with mood disorders, their families and friends, and anyone who wants to get involved.
electroshock.org—The site is maintained by a psychiatrist and offers information about ECT.
harbor-of-refuge.org—online peer support for people with bipolar and their families
manicdepressive.org—The website of the Harvard Bipolar Research Program at Massachusetts General Hospital offers general information, as well as a useful downloadable mood chart, and has a nationwide database to help you find bipolar specialists in your area.
mcmanweb.com—This privately run site for people with mood disorders offers chats, discussion boards, basic information, and ideas for managing your illness. The moderator is the author of Living Well with Depression and Bipolar.
med.jhu.edu/drada/other_org.html—website of the Depression and Related Affective Disorders Association (DRADA), associated with the Department of Psychiatry at the Johns Hopkins University School of Medicine
medscape.com/pages/editorial/resourcecenters/public/bipolardisorder /rc-bipolardisorder.ov—An enormous source of information on bipolar, this site is primarily aimed at clinicians but is definitely worth a look if you want to expand your knowledge about the scientific and clinical aspects of the disease.
medwebplus.com/subject/Bipolar_Disorder—MedWeb does free searches of health and science information.
mental-health-matters.com/articles/print.php?artlD= 550—A free online booklet put together by bipolar sufferer Shay Villere, this resource offers answers from someone who deals with the disorder.
mental-health-matters.com/research/bipolar.php—an extensive source of links to information on bipolar for supporters, professionals, and individuals with bipolar
mentalhealth.samha.gov—site maintained by the Center for Mental Health Services under the U.S. Department of Health and Human Services
mental-health-today.com—An excellent resource dealing with many forms of mental problems, it offers information on medication (and how to get free meds), a therapist search engine, a bookstore, articles, online communities, bulletin boards and chats, tests you can take, exercises you can do, information on stigma, an e-mail-the-volunteer page, opportunities to volunteer, information for clinicians, and more.
mentalhelp.net—A free service that offers a search engine for finding therapi
sts and a section on bipolar disorder that also provides general information on a number of bipolar topics, including symptoms and treatments, psychiatric classification information, bipolar news, and links to other Web resources.
mhsanctuary.com/bipolar—a clearinghouse for information on bipolar disorder, as well as support groups for people who have it and their families, bulletin boards, chat rooms, mental-health-related blogs, personal stories and articles written by people with bipolar, a file of frequently asked questions, and ideas for self-help
mhsource.com/bipolar—Part of the Mental Health InfoSource site, this Web source offers clinical treatment information, an electronic newsletter, and other materials to help consumers stay abreast of what's afoot in the clinical world. See also mhsource.com/interactive/chat.html, where you can find consumer and clinical chat rooms.
mhsource.com/narsad/html—The website for the National Alliance for Research on Schizophrenia and Affective Disorders (NARSAD) (see Research Resources, below)
moodgarden.org—popular support forum for people with bipolar and depression
nami.org—Formerly the National Alliance for the Mentally Ill, this organization calls itself, and really is, "the nation's voice on mental illness," providing the most comprehensive network of support, opportunity for involvement, and information on mental illness available. The organization is a major national presence, and the website keeps visitors up to date on NAMI's advocacy efforts and how to get involved. It also has a wide range of online support and discussion groups for people with a variety of mental illnesses. The organization has more than 1,200 affiliates nationwide, and this site enables you to search for a local chapter, get legal support, and more. It also publishes the useful twice-monthly newsletter NAMI Advocate.
nimh.nih.gov — The website for the National Institute of Mental Health (NIMH) states that its mission is "to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior." This is a good site to visit if you are interested in advocating for improved and expanded research on bipolar and other mental illnesses. To look at the page specifically on bipolar research and resources, go to nimh.nih.gov/publicat/ bipolarmenu.cfm.
nmha.org — National Mental Health Association (NMHA) is a nonprofit organization dedicated to addressing many aspects of mental health and illness. It has 340 affiliates nationwide that work to improve mental health through education, research, and advocacy. The website offers general information and access to its affiliate directory.
obad.ca/main.htm — Organization for Bipolar and Affective Disorders Society (OBAD), based in Alberta, Canada, aims to help people with a range of affective disorders, offering downloadable material on those disorders, an "ask the experts" column, and information about resources.
oreilly.com/medical/bipolar—Part of the Patient-Centered Guides organization, which publishes a number of books and other literature on a number of disorders including bipolar disorder, this site provides support to parents of bipolar children and adolescents, offering resources such as advocacy and support groups and links to other websites. It also offers information on related conditions and symptoms, special-needs parenting and sibling issues, special education, health care and insurance, medications and complementary treatments, medical facilities, and public mental health agencies.
patientcenters.com/bipolar—Gives links to publications, related websites, advocacy groups, material about medication and special issues related to bipolar disorder, and articles excerpted from Mitzi Waltz's book Bipolar Disorders: A Guide to Helping Children and Adolescents.
pendulum.org—Far-reaching website that includes information on medications and complementary treatments, stress management strategies, and diagnostic criteria, as well as an online bipolar support group, writing by people with the disorder, and resources to help you get more support.
psychcentral.com—Run by mental health professionals, the site claims to be the largest mental health social network. It offers information on a broad spectrum of mental disorders, as well as blogs, chats, quizzes, information on medication and treatments, an "ask the therapist" link, links to reports on mental illness in the news, and information about further resources.
psycheducation.org/index/html—An educational site that offers articles on a wide range of mental health subjects, particularly all types of bipolar; a therapist search engine; an "ask the doctor" link; and information about medications and other treatments.
psychlaws.org—The website for the Treatment Advocacy Center (TAC), a legal advocate for the improvement of mental health treatment, is an extremely helpful site that focuses on problems associated with the failure to treat people with bipolar and other severe psychiatric conditions. Much of this information is unavailable elsewhere. (See Useful Contacts for information on TAC.)
Useful Contacts
NAMI (formerly the National Alliance for the Mentally 111)
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
703-524-7600
Helpline: 800-950-6264
nami.org
See website listing for more information about this organization.
DRADA (Depression and Related Affective Disorders Association)
Johns Hopkins University Medical Center, Meyer 3-181
600 N. Wolfe St.
Baltimore, MD 21205
410-955-4647
med.jhu.edu/drada
Education and support groups for people with affective disorders.
TAC (Treatment Advocacy Center)
3300 N. Fairfax Dr., Suite 220
Arlington, VA 22201
703-294-6001
psychlaws.org
A legal advocacy organization founded to bring attention to the failing mental illness treatment system and correct its consequences. TAC's special focus is on people with bipolar, schizophrenia, and other severe mental illnesses who are being victimized, are homeless or jailed, are at risk of suicide, or are a danger to others because they are not being treated. TAC works to reform legal systems that prevent mentally ill people from getting treatment. It is a resource for individuals trying to reform treatment laws in their own states. Its free bimonthly newsletter Catalyst can be ordered by mail or online.
Research Resources
Stanley Foundation Research Programs
5430 Grosvenor Lane, Suite 200
Bethesda, MD 20814
301-571-0770
stanleyresearch.org
NARSAD (National Alliance for Research on Schizophrenia and
Affective Disorders)
60 Cutter Mill Rd., Suite 404
Great Neck, NY 11021
516-829-0091
narsad.org
Outside of the U.S. government, these are the two largest providers of funds for research on mental illness; the Stanley Foundation also funds brain research. Both organizations work to make up for the significant shortfall between what's provided by the federal government and what's still needed, and both welcome donations.
Bibliography
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Akiskal, Hagop S., and Mauricio Tohen, eds. Bipolar Psychopharmacotherapy. West Sussex, UK: John Wiley and Sons, Ltd., 2006.
Anglada, Tracy. Intense Minds: Through the Eyes of Young People with Bipolar Disorder. BC, Canada: Trafford Publishing, 2006.
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Aubrey, Jean-Michel, Francoise Ferrero, Nicolas Schaad, and Mark Bauer. Pharmacotherapy of Bipolar Disorders. Hoboken, NJ: Wiley, 2007.
Basco, Monica Ramirez. The Bipolar Workbook: Tools for Controlling Your Mood Swings. New York: Guilford Press, 2005.
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Bloch, Jon P., and Jeffrey Naser. The Everything Health Guide to Adult Bipolar Disorder: Reassuring Advice to Help You Cope. Cincinnati: Adams Media Corp., 2006.
Burgess, Wes. The Bipolar Handbook. New York: Penguin, 2006.
Carter, Rosalynn. Helping Someone with Mental Illness: A Compassionate Guide for Family, Friends, and Caregivers. New York: Three Rivers Press, 1999.
Castle, Lara R. Finding Your Bipolar Muse: How to Master Depressive Droughts and Manic Floods and Access Your Creative Power. New York: Marlowe and Company, 2006.
Castle, Lara R., and Peter C. Whybrow. Bipolar Disorder Demystified: Mastering the Tightrope of Manic Depression. New York: Marlowe and Company, 2003.
Corrigan, Patrick W., ed. On the Stigma of Mental Illness. Washington, D.C.: American Psychological Association, 2005.
Corrigan, Patrick, and Robert K. Lundin. Don't Call Me Nuts!: Coping with the Stigma of mental Illness. Tinley Park, IL: Recovery Press, 2001.
Daley, Dennis C., and Roger F. Haskett. Understanding Bipolar Disorder and Addiction. Center City, MN: Hazelden Publishing, 2003.
Dally, Peter. The Marriage of Heaven and Hell: Manic Depression and the Life of Virginia Woolf. New York: St. Martin's Press, 1999.
DelBello, Melissa P., and Barbara Geller, eds. Bipolar Disorder in Children and Early Adolescence. New York: Guilford Press, 2003.
Fast, Julia, and John Preston. Loving Someone with Bipolar Disorder. Oakland, CA: New Harbinger Books, 2004.
——. Take Charge of Bipolar Disorder: A Four-Step Plan for You and Your Loved Ones to Manage the Illness and Create Lasting Stability. New York: Wellness Central, 2002.
Fawcat, Jan, Bernard Golden, Nancy Rosenfeld, and Frederick K. Goodwin. New Hope for People with Bipolar Disorder: Your Friendly, Authoritative Guide to the Latest in Traditional and Complementary Solutions. 2nd ed. New York: Three Rivers Press, 2007.