The common psychiatric professional these days would call my malaise, "schizophrenia, undifferentiated." They would say I was in denial if I disagreed. That is because they simply don't ask the right questions.
I wean off medications, for months, even years at a time. When I am admitted as inpatient, I am usually involuntary because I am caught by surprise.
Typically, I am treated simply as a person who has "gone off their meds." Too loony to be credible? Once I have gotten sleep, other patients end up asking me for help with their complex problems. Yet, only once in hospital has someone ever asked for a complete story (mine) behind the biochemical disorder they tout is the "cause" of so-called "schizophrenia."
Am I in denial? No, I just ask a lot of questions of myself and then go looking for answers that truly fit my experience.
In getting educated, I asked a lot of questions--not of my doctor, because he was in that other place of denial (over-reliance on medications.). I eventually learned much of the organic brain structural change attributed to schizophrenia in the new sophisticated imaging studies.... is being seen on medicated patients. So, I had good reason to not want to be continually medicated, for meds might contribute to pathological brain changes if I simply took "their" medications without question. Or let myself be coerced.
As I have said, I am part of a team. I am a participant. A psychiatrist, my therapist and I work together now. It took me learning to trust myself and encourage my doctor to wean me off medications, so we could find out IF they were truly responsible for keeping psychosis away the way the medical profession will tell you.
For me the story is not as simple as "let us lead, take your meds as we prescribe and you will be fine." I cannot write or have the drive I need in order to create, if I allowed doctors to keep me on the higher dosages considered "conservative" enough for prevention. Conservative of what, I wonder. For I would sleep so much of the day away that I would get almost nothing done.
Dr. Nash (A Beautiful Mind) really has schizophrenia, for unlike me, he has residual symptoms. There are significant inaccuracies in the movie. For one, he did not have the visual hallucinations depicted in the movie; instead he lives with voices in his head. But more deceptively, in the movie the script has Nash (Russell Crowe) accepting his Nobel Prize, and crediting modern medications in helping him rejoin the world. Not so. The real Nash did it himself with the support of his compassionate ex-wife and colleagues at Princeton.
Interviewed privately Nash says that, instead of helping him get rid of his voices, the medications impaired his cognitive function; he could not do his complex mathematics on the medications of his time. Talk about a Catch-22. For the medications were supposedly fixing a problem. Nash is humble about his "success," though sure that he needed to be off the medications to improve his cognition, so important in refuting his voices. And of course, he needed cognitive function, free of side-effects like tardive diskinesia, to pursue the meaning in his life through his passion, Mathematics.
Today, doctors will tell you the side effects of antipsychotics are less impairing. I guess that is true if you don't think excessive weight gain and loss of initiative and all-day-grogginess are impairments. If you can accept that as quality of life. I don't.
As a scientist my poop detector went right off, the very first time I was actually reassured, "It's like insulin for diabetes!" The truth has a way of showing itself, as the atypical psychotics, "better" replacements, have been shown to contribute to diabetes.
I don't have Nash's worst symptoms. Like I said earlier, I "just" have this wonderful, rare sensitivity, and it blips into my life and then right back out. One night of no sleep at a trigger point, and I lose my usual reference points and can't "make" the curve. Yet, once I am back on track, I can again, make the curves of my life relying on my good cognition (which returns, once I am able to get restorative sleep.)
I continue to wonder, how many stories like mine, with variables like peri-menopause (which often impairs sleep and can produce extreme emotional lability), with poorly managed anxiety... get diagnosed as schizophrenia? I count my blessings, to know of people whose life experiences have supported my hunches, as I asked the questions I needed to pursue in order to find real healing.
Here is the paradox of emotional (or mental) illness: An unclouded mind will forever be interested in pursuing the best information and the best choices for health.
It's been a mighty challenging journey for me indeed, to have my gut feelings validated when I suspected that the medications were not preventing anything and only "clouded" or impaired my recovery. For being invalidated is a trigger for me. As it might be for many so-called schizophrenics.
Maybe it is high time we went back to an understanding of schizophrenia that allowed us to consider family history in the diagnostic work up. I'd like to have the good docs tell me it was not important to my own illness story that, in childhood, the dysfunctional reality of my childhood was also constantly denied.
I find the conundrum brings a smile to myself these days, instead of anger and frustration. The smile comes from the relief in knowing I have become correct in assessing my own story. And that is just the way it has to be for lasting healing.
Is schizophrenia a total tragedy, or does it just point out that we need to learn to use more of our minds in order to heal a "malfunctioning" portion of our brain?
To heal the brain, we need to foster healthy thinking, using the mind. A beautiful mind that is not clouded nor damaged. Would it not be ironic if the very drugs we are told we should take (or be labeled "non-compliant") were a major obstacle to true recovery?
I especially find it disturbing that there is a hands-off attitude in the medical profession towards the illnesses involving psychosis. Rarely does a medical doctor stay involved and work on the mental illness together with a psychiatrist (and psychiatrists do not spend much time with patients--15 minute medication check-ins and rarely does the psychiatrist look at the whole health of the individual.)
As an example of an occasion when a general doctor might be helpful: sometimes a person will experience psychosis in response to low-blood sugar. Any correlation would most likely be totally missed once the person is diagnosed as schizophrenic. Or especially so, if patient were already diagnosed as schizophrenic and on medications. The doctors would, in good conscience, just up the dose.
A cloud indeed for a beautiful mind affected by reactive hypoglycemia or undiagnosed diabetes.
Another time I will talk about the power of belief, and how for some of us, over-reliance on medications takes away our beliefs in ourselves and our resilience.