A question that continues to come up for me is whether or not I have a mental illness. Over breakfast this morning I spoke with my friend Jeff, pondering the possibility that perhaps the four psych-evals I’ve had were rigged and that the dozen or so psychiatric professionals I have spoken with over the years had all come to the wrong conclusion. They think I have schizophrenia. But what if I don’t. What if I’m as sane as the next person, despite what the evidence shows?
Jeff chuckled. Not in a condescending way, but in the way that your best friend will laugh along with you when you realize that what you’re saying is too outlandish for words. It helped to ground me. After all, he’d been to the hospital with me for panic attacks and psychotic breaks as often as three times a year over the past nine years. He was by my side in the psych ward when I’d attempted suicide. There’s a history there which supports the doctor’s findings, yet sometimes I still question the diagnosis.
Of course there’s the medication and the hundreds of hours of therapy to consider. To what end? They say that when one feels normal it’s because the meds are working. So where is the root of my suspicion? Why would a dozen professionals lie to me? How far does this conspiracy spread? Is it all being done to line the pockets of the insurance companies and Big Pharma? Am I just being paranoid?
Ninety percent of an iceberg is typically underwater. Only the tip can be seen above the surface. There is no nefarious plot against this party of one for the reasons of “just because”. Nine-tenths of what I can’t see is stuff I’m keeping to myself—things I won’t discuss in therapy, fears I won’t express, self-stigma I won’t face up to. If I don’t speak about it, it’s not real. Which is not true. That’s just fear and naïvety. What do I have to gain by sabotaging my mental health? Nothing.
I worked hard to achieve and maintain the stability I do have. In the maelstrom of voices and hallucinations I was a tiny titan. Letting go of those tireless efforts meant trusting that the doctors were right. The preponderance of data collected should have been proof enough but I couldn’t see it, resulting in a trace of the symptom called anosognosia, a lack of insight or awareness of one’s illness. My question today is how this symptom, transient though it may be, continues to shove my back against the wall. I should know better. I’m educated. I’m medicated. But there it is nonetheless, punctuating my breakfast conversation, the query to beat all queries: what if I’m not sick? What if everyone else is wrong?
It’s easy to take the position that I am not my diagnosis, which, on the one hand, is absolutely true—to “be” one’s illness would be patently absurd. On the other hand, if I meet the criteria, then, yes, that diagnosis is mine. I live with schizophrenia. There is no fault or blame. It’s a genetic disease, one I’ve had all my life and will have until death—chronic and debilitating, yet manageable to some degree. If I don’t like those odds, what’s my recourse? Pump up my ego and act out defiantly? Protest? Against whom? Who do I hang in effigy? Myself? All that aggro is so counterproductive.
My mind is locked in an argument with itself. I have no way to override it. Logic doesn’t work. Proof does. So it gets down to surrendering my self- conscious position and allowing the doctors I’ve entrusted to implement their practice. The psych-evals were not rigged and the therapy sessions were not futile. Their conclusive evidence spells it out; I can’t, or sometimes don’t want to, concur with their findings. Symptom or self image, one or the other, blocks the truth. I can live with the pain or find relief. It’s up to me to take that step.
It gets down to this: I can’t see what I can’t see. It’s beyond my control. My only course of action is acceptance. That’s where empowerment is found.
Is it a challenge to sail by the tip of that iceberg, navigating waters I’m still learning about? Yes, it is—that’s the process. Do I have what it takes to steer clear of the missteps and pitfalls? I think so. That’s where faith comes in. Can I see my situation through the lens my doctors and therapist do, see a pathway to something better than a tumultuous crash with no future? Absolutely. That’s called participation. But does this mean that I won’t question my situation from time to time? No, it does not. Because I’m only human.
You Mr HBJ have yet again written something I needed to read for my understanding of my son!!!! I appreciate every word you write every single time you gift us with it!!!
Yes you are only human and so is my child and I ‘get’ every word you stated!!! Thank you again and like I always do — I look forward to your next gift of writing to us all!!!!
Thank you, Monica. Being human is a full-time job for each of us. My best to you and your son!
Henry, it’s only human to second guess, or have doubts.We do the same. Something so elusive as a concrete, in writing diagnosis?
You are always our lighthouse !
Thank you, Carol. Those doubts will probably always be there, as that is the nature of the diagnosis. Hard to avoid. That said, finding clarity and believing in it is where I think the healing lies. Thanks again for commenting!
Hey. I’ve been living with mental illness for 30+ years now. Initially diagnosed with schizoaffective disorder, then “downgraded” to bipolar, and now with PTSD… what happened to me during my years of recovery is that my symptoms stabilised gradually to such a degree that the more serious diagnostic labels no longer seemed apt. Also, I stopped really caring about the label, focusing instead on my recovery – on doing whatever I could to promote my own well-being.
Diagnostic labels, I was told (by the first psychiatrist who forged an alliance with me), are meant as a sort of shorthand that allows medical providers to correspond easily with one another and with insurers. Very few laypeople have any clue what they “mean” and fewer still have a clue about how hotly debated and disputed these discrete categories of ailment remain to this day. The science is still mostly lacking…
But you, Henry, have done something remarkable in publicly owning this label: schizophrenic. For surely, the fact you own the label turns the idea you suffer from anognosia on its head. My own experience of schizophrenia and recovery leads me to make the observation that it is a strange disease that once admitted to, slowly ceases to exist in the person who acknowledges it. What happens to anognosia when it leaves us? Where does it go and how did it arise to begin with? If it can leave us, was it then not a sophisticated form of denial? And if it was denial, and self-awareness is the outcome of its healing, is the schizophrenia biological, or psychological?
It is never so easy to reduce human experience and human consciousness to descriptions that are purely biochemical, genetic, or material. Like it or not, human beings are material conglomerations interacting within a cultural matrix. Healing and recovery, in my opinion, happen when both the material and social/emotioanl/cultural person receives treatment.
Got lots more to say and perhaps will comment again another time! I really appreciate your pioneering blog and the honesty in your writing.
Thanks for your insightful comments—much appreciated.
I’ve been struggling with metal illness for many years as well, but only surrendered to treatment in the recent past, and for the better, I must say. I write the blog in real time and as “think pieces” primarily because I want readers to have the opportunity to do as you have done and share their own experiences straight from the heart. So thanks for that. Keeping the loop alive. Cheers!
I feel scared in this endeavor to communicate. To be in recovery from schizophrenia is akin to being in recovery from cancer. A risk of relapse exists for me still after 30 years of recovery, although I can bounce back quickly now even from a psychotic episode. This path of recovery has its hazards, and remains perilous. And stigma has by and large prevented me from openly sharing my experiences until very recently.
I have a dear friend in my life now who was diagnosed ten years ago with this disease. He studies the response made to the AIDS epidemic by community activists for an inspiring example of the progress that can be made to surmount stigma and demand effective treatment.
You say you “surrendered to treatment”. I’m wondering if you’ve surrendered to love of self and love of the truth.
You are a pioneer.
Thank you for your courageous approach to wellness and resiliency in the midst of medical and emotional obstacles. You have given me hope that my son will one day find his path to wellness. Thank you
You’re welcome, Mari, and thank you for commenting. I hope that your son finds the path to wellness with all the grace and dignity he deserves. In my opinion, it takes a lot of faith and stamina and trust to make it there, and sometimes, as I highlight in this article, I still question where I’m going and where I’ve been. There’s a lot of fog in the diagnosis, and it affects each individual differently. Hope is key. Talking helps a lot. I talk about everything I can with my team so that they have some insight into how I’m doing. Sometimes that takes courage. I wish the best for you and your son. Thanks again.
You’re reminding me of an old poster: brown paper, wrinkled like a used bag. In bold Orange print: Question Authority. Then in the lower right corner are two cartoon guys. One says “All authority?” and the other “Yes! All authority!” It’s such a gift, your showing us as you peel the onion. Thanks for another insightful post.
I like this poster, Kiki. I imagine Pogo or Calvin & Hobbes. I even question my *own* “authority”. It seems this illness is a huge box of questions, but I’m willing to untangle them to keep my sanity and find out what happens next. Thanks for you comment.
I really appreciate what you’ve shared here. It helps me to better understand my son who also has schizophrenia. Thank you.
Thank you, Diane. One of the main reasons that I write about my experience with schizophrenia is to hopefully help put a face on the illness so that others can better understand what it’s like. I really appreciate your comment because it lets me know that the message and the conversation is out there. So thank you. My best to you and your son.