‘An Open Letter to Persons Self-Identifying as Mentally Ill’ by Andrew L Yoder

ayoderA brilliant and empathic blog off Mad In America. Thank you, Andrew.

‘Hello, My name is Andrew, and like you I have experienced severe cognitive and emotional distress in my life.  This distress was sufficient that I once received a psychiatric diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, though I imagine other diagnosis could have easily been applied as well.

I know what panic attacks feel like.  I know how it feels to experience a “dissociative episode” from the inside out.  I know what it feels like to believe that you are going crazy.  I know what it feels like to convulse in sobs so intensely that you tear muscles.  I know what it feels like to want to die.

I remember that in the midst of my terror and confusion there came a point where I desperately wanted a label – a diagnosis.  I wanted someone to tell me, in explicit terms, what was wrong with me and how to fix it.

I can recall scouring the internet through tears trying to find a diagnosis that described my symptoms.  I needed to believe that I was ill, just like if I had a disease or a virus, so that I would have hope of a “cure.”  It felt like the only thread of hope I had.

I have been on (admittedly mild) psychiatric medications, and those did help to some degree, especially in the short term.  I was also blessed to find a therapist who practiced compassionately and genuinely listened to my voice as I expressed my needs.  Many of you were never so lucky, and many others across the world are also less fortunate.

While I felt that I needed the label of mental illness to give me hope that I could be “treated,” my therapist was surprisingly less eager to give me what I wanted.  She managed to express genuine empathy for my distress and show her willingness to partner with me on a path to healing, but did so without ever willingly giving me a diagnosis.  It was only at my strong insistence that she finally conceded, and shared with me the diagnosis she gave for me, and which medical insurance demand be assigned to people.

My physician was not so cautious.  He was a very pleasant man that always seemed to take his time with me and did not talk down to me.  Yet as I described some of the emotional distress I was experiencing, and the ways it was affecting my life, he told me with great certainty that mine was a totally common experience.

He told me that I had a biological condition in my brain, one in which certain chemicals were “imbalanced.”  He told me that there should be no stigma about asking for assistance from him.  Specifically he told me, “Trying to not be depressed is like telling a diabetic to just make more insulin.”

He prescribed an antidepressant medication, saying that this was no different than taking medication to regulate blood pressure or manage cholesterol.  I was told of the likelihood that I would need to remain on some form of medication for an indefinite future.

Today I can share with you the good news that I have experienced what I call “deep healing,” but others might call ”recovery” from even these most extreme of cognitive and emotional states.

And yet, my pathway to this place of healing did not come through a diagnostic label as I thought it might.  Nor did it come through psychiatric medications (though I understand that medications might be a helpful and important part of your own healing, if that is what you choose.)

Instead, the primary source of my recovery was the genuine empathy expressed by those partnering in my recovery.

My path was also not through the intervention of behavioral therapies , or solution-focused or problem fixing therapies (though I accept that any or all of this may be helpful to someone else.)

Rather, I was lucky enough to find a therapist who altered her plans for a cognitive-behavioral intervention after truly listening to me express my own sense of what I needed.  We engaged in the now largely out of favor psychotherapy, or “talk” therapy.

The path to my recovery was primarily talking to someone willing to genuinely listen and explore emotions and experiences.  Meaning-making of my experiences, and understanding the hows and whys of how I came to experience myself and the world in the way I did was what was most healing to me.

I’ve shared my background story, because I wish to persuade you not to hold the label of “mental illness” too tightly.  Again, I’ve lived the experience of feeling a desperate need for a psychiatric diagnosis.  I understand the feeling.  I only ask that you keep an open mind and consider what I have to say.

If you’ve spend any time at Mad in America, you’ve noticed a strong critique of a medical model of mental illness.  In fact you’ve probably noticed a strong critique of the term “mental illness” itself. You may have read persons arguing that mental illness is a mere social construct, or that mental illness is a myth.

I worry that this may feel frightening, or possibly even create a sense of powerful loss.  I could even see how hearing such things, depending on what you presently experience, might even feel like it threatens to take all your hope away.  I would like to try to ease those fears.

I feel confident in saying that there are few (if any) people arguing against the medical model or label of “mental illness” who deny the absolute reality of your real experience of distress.  I certainly do not.  I’ve lived the experience, and while not identical to your own, I feel it is fair to say we have some common ground.

I believe that anyone, given the right context and circumstances, can experience even the most extreme forms of cognitive and emotional distress.  What we sometimes call hallucinations or suicidal thoughts or deep sadness or panic and all the like – these are not experiences that you must accept as “just the way things are” without any hope of easing suffering.

However, I believe that treating the term “mental illness” as a literal truth does more to harm that hope of recovery than it does to help it.

You see, along with the popular claim that mental illness is a literal organic brain disease “just like diabetes” is a set of other dogmas unproven and unsupported by evidence.  These include, being regularly told that not only do you have a disease but that this disease also has no cure and that you will struggle with it for your entire life.  I have trouble imagining anything more hopeless than that.

It also includes being told that you must take psychiatric medications, and often many different psychiatric medications for the rest of your life, and you should never ever consider stopping them.

This despite what we know about the limited efficacy of these medications (anti-depressants are barely more effective than placebo in clinical trials; anti-psychotics have a short term effectiveness but increase susceptibility to psychosis, have major medical side effects and decrease brain size over the long term.)  Where is the hope in this?

Looking back now, I wish the physician who prescribed me anti-depressants would not have told me stories of “chemical imbalance” that are simply not based in science.  In truth, most psychiatric medications alter normal brain activity, and there’s no evidence of an identifiable chemical imbalance of any sort at the root of emotional suffering.

Research suggests that there are some risks associated with long-term use of antidepressants, including the possibility of decreasing benefits from the drug and something referred to as “treatment resistant depression.”

I believe that psychiatric medications did assist me in my process over the short term.  However I also believe that I was on them far longer than needed because of misinformation from my physician.

I believe my long term use of antidepressants has impacted my overall range of emotional expression.  I believe that my long term use of antidepressants has made discontinuing them entirely much more difficult.  I feel that I was robbed of my right to make a fully informed decision, and that has had consequences for my life that I still feel.

Thankfully, those consequences are minor compared to the tragic experiences of many who are denied their right to informed consent.  Overall, I am a happy, healthy human who has experienced significant emotional healing.  But I still cannot help but feel anger and resentment at the disinformation presented to me by doctors which took away my right to choose.

Professionals that subscribe to the belief that mental illness is a literal thing, also by and large subscribe to the belief that genuine recovery is impossible.

Instead, recovery is redefined to mean “effective symptom management” and persons labeled as mentally ill are encouraged to have “realistic expectations and goals” related to their lives that appreciate the limitations of their “illness.”  This is not hopeful at all.  It is false-hopelessness.

Those of us challenging the evidence-absent medical model and the objective “mental illness” label that goes with it are not trying to take away something hopeful and healing from you.  Instead, we wish to counter the false-hopelessness of a system that sees you as second-class people who will never be “normal.”

I am not here to minimize your real experiences of deep suffering.  I know they are real, and my heart aches for those of you who experience that pain.  But I am here to tell you that people can and do experience healing, restoration, or “recovery” from even the most extreme forms of distress!

You are not “ill” in any objective or literal sense.  The term “mental illness” is at best a metaphor.  You are not an “other” – one of the sick people, the “less than people.”  You are a fellow human being whose experiences have led to intense and distressing mental and emotional experiences.  Any one of us could experience the same.

Those of us challenging the mental disease model are the ones emphatically declaring that there is hope!  You can fully recover from even the most difficult distresses.  I know this because of my own journey of healing, and because persons who have experienced even more intense distress than I have also experience such recovery.

You can be free to make the decisions that feel right to you, including whether or to take or not take, continue or discontinue, any medication whatsoever.  You can experience the support of a community not married to a medical model that sincerely believes in you and honors your voice.

So as you continue to hear from people who challenge convention – namely the evidence-absent claim that “mental illness” is an objective thing, that there are literal mental diseases with clear biological causes, that people who have these “diseases” can never fully recover and must take powerful and dangerous medications for the rest of their lives whether they want to or not – remember that we also fully validate the reality of your lived experiences, both beautiful and painful.

We know that mental and emotional suffering is a real experience that many, many people face.  We also know that nothing good comes from convincing people that they have a biological disease when no evidence supports that.

Questioning the legitimacy of “mental illness” doesn’t make the reality of the pain any different.  But it does help people avoid the pitfalls of misinformation and powerlessness in their own recovery and wellness.

I am not saying that you are not hurting.  I am saying that you are not broken.  I am saying that there is always hope.

Love and best wishes to you,