Psychiatry has finally admitted that the arsenal of "powerful" weapons used against what we call "schizophrenia" have not been proven effective. If the psychiatric profession can hold to its words, Thomas Insel, director of the National Institute of Mental Health, is giving validation to those professionals in psychiatry who have have been faithful in questioning the dominant model of treatment: pharmacology. This may be the green light that will help patients get the real care they need, after years after years of being "sold" on "trying out" the emperor's latest new clothes (pharmaceuticals).
This is a day of hope for me personally. Yet I am also very very cautious even as I wish to support positive change. I know the road ahead is going to be challenging and tragic for some, whose psychoses have been treated for YEARS with a cocktail of brain-damaging drugs...
Some people's lives have been lost or ruined. My husband had an uncle who died at his own hands escaping a mental institution. Tony supposedly had schizophrenia. One of my cousins was institutionalized for over 25 years, supposedly due to schizophrenia. Today he is in a half-way home and presumably, still medicated for revised diagnoses.. schizoaffective disorder or bipolar I, II or.....?
Even if you do not know what schizophrenia is, or what a psychosis could possibly have to do with you, Insel's "announcement" (it comes in conjunction with a series of articles in last week's illustrious journal, Nature) has far reaching effect for anyone who has ever suffered anxiety, depression or mania, and for those who have a family member of friend with any kind of mental illness. For mental illness, treated incorrectly, has a ripple effect across everyone's life. As well we know in Al-anon.
Read on if it will help you to read my more informal narrative of terms, sharing where my own story fits in.
Psychosis does not have to be hearing voices or seeing things that are not there. It can be mis-interpeting the reality around you, having your own story line that no one recognizes as having any basis in the reality of others in the room. Paranoia and fear and lack of sleep can "make" a person psychotic. This happened with me, as I was going through "the change" earlier than most women do. My son was four years old.
Schizophrenia, from my own humble experience, had become a catch-all term applied to anyone who shows up with symptoms of psychosis. I was diagnosed with it more than once. It is scary and you want to believe doctors when they tell you they have something that works to relieve symptoms. But then you begin to wonder why your crisis happened, and the doctors have no answers, even if you ask again and again.
Unlike my cousin's mother and extended family, my husband gradually learned to trust me when I shared with him that I did not think the medications were treating the source of my problems. I had to fight for answers. My voracious appetite for reading was my salvation. Robert Whitaker's book Mad In America was the first validation of my hunches. Then I began to us google. Whenever I had a question, I posed the key words that I suspected had validity from my own experience. A scientist by training, I culled out the unlikely and connected the dots as I saw fit.
My doctor did not believe me (and, in trying to see my case as having a different diagnosis, told me I was manic when I would try to assert myself) until I finally discerned all of my proven risk factors, and brought my husband in to show that someone else (a phD research scientist in microbiology thank God) did not consider me to be crazy. My husband also supported me when I asserted for the last time, that I did not have bipolar, had never had mania, and asked how we could stop my medications now.
But still, for this three years, I've held onto to my doctor's hand, sometimes asking for reassurance that I was OK, sometimes demanding it. Intermittently I would decide to use the smallest dosages of my medications because I was afraid of relapse. In order to have a relationship with someone in the profession who (I think) believed I could be well.
Soon I will be going on a complete drug holiday, after I pinch myself to be sure I am not dreaming...