Have my antipsychotics literally changed my brain? Have they exacerbated my schizophrenia?
An irony: an effect of antipsychotics is that less dopamine (a neurotransmitter whose work is affected in schizophrenia) is sent as a message to the next neuron, but in fact, this may actually cause a "supersensitivity" to dopamine. In "The Scientific Case Against Forced Drug Treatment" presented by Robert Whitaker in February, Whitaker runs with this, blaming antipsychotics for causing psychosis.
There is some evidence of dopaminergic supersensitivity in medicated patients but, again ironically, it is time-limited and seen most in the patients with schizophrenia that have the best prognosis. Perhaps that is occurring in my own medicated brain. Would Whitaker recommend (strongly) that I stop taking the medication?
However, when my brain is unmedicated, my schizophrenia runs rampant. I am psychotic, hallucinating, and awash in paranoid delusion. I do not go to work, I do not answer my phone; I flee to the streets lest the police come to my home and collect me for yet another hospitalization. I live in constant terror because microscopic rats are eating my brain and a homicidal man is tracking me down to shoot me. I am not on medication. That is my right. But have I chosen to be med-free of my own volition?
How do you choose for or against psychosis when psychotic? By very definition, you are of "unsound mind" when making that choice, the criteria accepted by most mental health care professionals (along with being a danger to yourself or others) as the green light to provide medication without your consent.
Personally, I have been on the receiving end of forced medication. Throughout my 11 certifications (forced hospitalizations), I was repeatedly injected with drugs without consent. More specifically, against my consent, I was screaming and crying for them to not inject me. I never won. But now, I take medication for my schizophrenia voluntarily every day. Why? I learned from those forced injections that meds made things easier: voices are quieter, delusions and paranoia smaller.
I would never have consented on my own, preferring to exercise a "right to be unmedicated" over a "right to life-saving treatment." While I do not believe that every forced intervention was warranted, I do believe that without some involuntary treatment I would be at best psychotic and, at worst, dead. Oh, did my voices ever want me to kill myself. I count myself lucky that some medication ordered by some doctor brought me out of that state.
Now, is life without schizophrenia and without medication a possibility? I know from experience that every relapse followed a decrease (or cessation) of my meds. Round and round that revolving door. Isn't that the definition of "insanity:" to repeat a behavior expecting a different response? I kept stopping the medication, only to wind up on the hospital psych ward again. Finally, I understood: take meds and stay sane and free.
Or am I a deluded victim of the "drug era" I am in?
Robert Whitaker's presentation ("The Scientific Case Against Forced Treatment") to the Mental Health Legal Advisors Committee, astonished me at the absurd simplification regarding that "pre-drug and drug era" (1947 and 1967): who can enumerate the countless other factors between these two "eras"? What about the start of an "era" of having more and differing social facilities to support those with mental health become not only available, but also coming with progressively less stigma.
Across Whitaker's "eras," successful "living in the community" has a multitude of possible interpretations (which he fails to note). This includes how long people with schizophrenia live at home as (mentally ill) adults versus in some form of "group home" or supported housing.
In our society decades ago, and across a variety of cultures, many people with mental illness would have been more often cared for among relatives. There are vast differences regarding mental illness acceptance and support across both time and space; differing world-views and beliefs systems must be taken into account when defining such things as "living in the community."
Finally, where in his presentation does Whitaker acknowledge that those most likely to be medicated are those most adversely affected by a psychotic disorder such as schizophrenia? And that this population will show less improvement, regardless of whether they are being medicated. I count myself fortunate in that I do respond to the antipsychotics I am now taking, despite being labeled "severe," "refractory," and "chronic" in the past. It would be great if I could go without meds, but I have learned all too painfully that I get my life back when I am taking those little pills.
Would you like to hear more of my story? My memoir, When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia, is available on Amazon.