How can we heal from the implicit bias of “Mental Illness” and “mentally ill”?
I hear these words and it sounds like fingernails scraping down the chalkboard.
“The stain of dehumanization colors the mind, body and spirit and it is not so easily washed away.” – Michael Skinner
Recently I read a blog post at the ACEsConnection website, “Erasing My ACES” by Sirena Wheeler. It was posted on April, 19, 2020. It struck a chord with me, many in fact and it put me on a spiral down memory lane. It was a trip that I did not want to embark upon, I had other plans. But, that is the inherent nature of trauma and how it comes-a-calling in my life.
For several days I have wanted to respond, but I couldn’t, due to all of the intrusive thoughts, memories and feelings that were dredged up. And my good friend dissociation also came to visit. Dissociation, a useful coping skill as a child and teenager when being hurt, but a pain in the butt as an adult. And yes, I have a wealth of coping skills to help me get through it. I have found that patience, time and being in the moment, the best that I can, to be the healing balm I need. Strong doses of walking and being in nature are also key.
I would gently urge a reading of Serena’s post and all of the ensuing comments of support and praise for her in writing the article. I will share a snippet of the piece to help set the table.
Erasing My ACES @ ACEsConnection by Sirena Wheeler
“The new doctor greeted me cheerfully when entering the room, smiled while hearing what brought me in, and efficiently told me she’d have me fixed, back up and running in no time. And then, this appointment changed to reflect many of my recent interactions with healthcare professionals. She opened my medical record, and scanned the contents for any particular warnings and red flags. She paused, noting my ACE score. I watched as her expression darkened, and she seemed to bank all the hope she’d had for me to a reserve for other patients. The mood of the room became somber, with, “I see you have an ACE score,” setting the tone. Setting me up. The quick, assured solutions offered to me just moments before evaporated, leaving a bare recognition that I am a long-suffering human, who is just suffering a little more in a particular area at the moment. No future, only a product of my past. The quick change in direction was brushed aside with a murmur of explanation stating, “You may not respond to therapies as well as other patients.” I was handed a far less expensive, but more difficult to endure treatment, and told that there would be no further ‘care’ offered at this practice if I did not fully comply. My questions about follow-up were ignored. And then, the door closed. Like others had before, after re-traumatizing me through grilling questions about my street drug use, my latest suicide attempts, if I was being honest with a psychiatrist, and whether I had sexual partners outside of my marriage. Nothing in my personal record pointed towards these interrogations, they were a product of my physicians’ bias. Answering in the negative was met with skepticism that meant I wasn’t believed. It was hinted that answering in the positive would only allow the physician to pass more responsibility for my care on to others in my medical team because the lifestyle complexities meant that it was “not their department.” Crestfallen, with no offer of support, I alone was responsible for the coordinating of my care.
I had to wonder, what in the world was an ACE score, and why was it causing this pain? It turns out, that I had been labeled with an Adverse Childhood Experiences Score, a number that helps to explain a person’s risk for later health problems and challenges. Given to me early on, never explained, but recorded, and copied; over and over, office to office, with every transfer of my medical records. In contrast, a medical diagnosis in my records directs a prescriptive means of treatment for the condition it describes. A label simply summarizes, “Here is a victim, likely difficult or impossible to succeed with any treatment.” Assume the worst of her lifestyle and ability to cope, offer the least in treatments- she is likely already overtaxing the system. Keep her from affecting the measurable outcomes of your practice.” – Sirena Wheeler
And an excerpt of Cissy White’s comments – “….Despite that and my work, I’ve only had one positive experience in a medical setting talking about past trauma. Usually, sharing leads to being treated with less care, compassion, dignity or be written off or discriminated against when someone only sees a diagnosis or a label which can be PTSD, an abuse history, or high ACEs. Or, sometimes, the discomfort of the provider is so palpable that it permeates all else.
I’ve shared about my ACEs with a functional medicine nurse practitioner who I had an hour with. I did that only after she gave space, respect, and shared info. with me. It was the best appointment I ever had and made me feel spectacular, seen, and motivated me to get more invested in my own wellness. But often, sharing has been met with confusion, ignorance, or people over assuming and under assessing the cause of health issues.
For me, the sharing that has been most possible has happened outside of medical settings with family, friends, survivor circles and parents.”
……While many hope and maybe assume a trauma-informed setting would always be safe, compassionate, equitable, etc. that assumption has to be checked and compared with the real experiences of people with ACEs, in patient settings, not just what providers say, intend, and report.
There are lots of past and present experiences showing that equity, respect, compassion and good care result from sharing about the cause and impact of traumatic stress from ACEs as well as other neglect, violence, and injustice. Hopefully, things will change, people will change, systems will change. But, til then, sometimes it’s safe and wise to erase our ACEs in some settings, in order to get the best treatment.” – Cissy White
These are the comments of two people and yet, their experiences are echoed by countless others. That says something is drastically wrong with the treatment providers in the medical and mental health community. They may be “trauma-informed”, but not trauma-informed practicing.
I have been advocating on the matters of trauma, abuse and mental health since 1993. I would like to share some of what I have learned from so many across this country and a few of my experiences when seeking help and the backlash for doing so.
Despite a history of enduring protracted and severe emotional, physical and sexual abuse at the hands of my parents and some of their perverse friends as a child and teenager, I found a way to make a living as a professional musician and support a stay at home wife and three daughters. At the age of twenty eight I started my own business, representing rock bands and musicians. I still continued to perform as a drummer in a rock band on the weekends. Eventually I opened up a sound and lighting company and had a small record company. As a professional musician, it was a working class income, but good enough to provide and own a home. As a business owner, I was very successful, and financially, our family, now with five daughters, appeared to be set for life.
Then my past trauma came calling. In January of 1993 I suffered a nervous breakdown or breakthrough. It was time to heal the injuries from the past.
And that is when the re-traumatization, dehumanization and mistreatment of me as a human being started. I was a husband, a dad, a professional musician and business owner who was only seeking help to heal, to get my life back on track. And then I heard those two words, incessantly, that still cause me to feel nauseous and damn angry – “you’re mentally ill, you have a mental illness and you will never work again, blah, blah blah”. All of these encouraging words came from most of the mental health providers. I became an object of derision and contempt because I was presumed to be weak. And no, they did not say they held me in contempt or thought less of me, but their actions let me know every time I would voice a concern, a desire to live life again, to be a musician, to work, etc. Even those who thought they were being kind and compassionate in their delivery of – “No Michael, you cannot do that, maybe someday you might be able to volunteer in a music store or maybe, a book store that sells records, but you cannot work again because you are mentally ill.” – were hurtful.
I lived in a world of silence, shame and blame for all of my life due to the horrific trauma of my childhood. And now, these caregivers were only reinforcing what I felt inside. That I was less than human.
On top of the degradation of my psyche, came the regimen of drugs….I never took any illegal drugs in my life. But now I was over-medicated on anti-psychotics and other psychotropic medications to help my PTSD and depression. I was never psychotic and the medications caused all kinds of side effects, including suicidal ideation. But they don’t tell you those things, just take the medications, they will help you, because you are “mentally ill.” “You have a diseased brain, it’s in your genes…blah, blah, blah…”
I am not anti-medication, I am against being over-medicated and in favor of letting people know of the possible side effects. For some people, the meds work great, for many of us, not so. And for some, they lose their efficacy.
Now I had labels, PTSD and depression. And those bring their own inherent re-traumatization, dehumanization and mistreatment from medical providers. A visit to a doctor because of a urinary tract infection was more than an unpleasant experience. When the doctor questions your infection and the pain and discomfort you are experiencing, it sucks the oxygen out of the room. And once again you feel the shame and the blame. “Mr. Skinner, you’re mentally ill, this is most likely all in your head.” It took a lot of pleading with him and the nurse, please do the test. Yes, I did have an infection, no apology, but I got the prescription. Ditto to a visit to the dentist for tooth pain, same scenario all over again. Those are only some of the many experiences I had when seeking medical help.
There were kind people in these medical and mental health systems, who did not look down upon me with derision and contempt. But they were part of the system and this is all they knew or were forced to practice.
And you truly come to understand the devastation of those words, “mentally ill and mental illness” when you are in divorce court. When your soon to be ex-wife, your partner of twenty one years, uses those powerful words in her pleadings and her attorney drives that message home, over and over again, then you know how truly low you are on the human being scale of life. And let’s not forget, throw in a good dose of, “he was sexually abused as a child, I’m afraid to leave him alone with our daughters”.
The reality of my being able to be engaged with my children was driven home, when my attorney asked to approach the bench with me in tow. “Your honor, Mr. Skinner has never had a history of violence or abuse at his wife or his children….” Judge’s response – “I know Mr. Skinner is not violent or abusive, he’s mentally ill.”
What were my crimes of being “mentally ill”; dealing with flashbacks, staying in my bedroom, several voluntary hospitalizations and zoned out from the meds and the depression, but that was not all of the time.
There was a period of time that I worked with abused and neglected kids and troubled youth as a court advocate and mentor. I learned how the New Hampshire Division of Child, Youth And Families had an unwritten rule, “any mentally ill parent was an unfit parent”. I heard this echoed from several staff members, so I certainly did not disclose my own labels.
I’ve read articles that report how, 70 percent [and higher] of children with a mentally ill parent are removed from their homes and placed in foster homes – even when the court has found no evidence of neglect or abuse. I’ve learned that one out of five people will deal with a mental health concern in their lifetime, but two thirds will not seek help because of the stigma and discrimination. It has been documented that within the mental health systems of care, many have bias against the very folks they are trained to help.
I understand that this is a blog post and not a book chapter, so trying to share the experiences of degradation and indifference over the past twenty seven years cannot be accomplished here. The sad reality, I continued to experience this mindset, that I must be imagining these symptoms due to my mental illness, over and over again. So whether it is the Ace Score or the label of mental illness in your chart, the outcome is still the same, you are dehumanized by their mistreatment.
In the late nineties I experienced a brutal assault and beating by five to six individuals, in the wrong place at the wrong time. A counselor I was seeing, well versed in trauma, told me that something else was going on with me besides the PTSD and depression, that I needed to see a doctor. Well, I did and by now you the drill of what was said to me by several treating physicians and psychiatrists. When I finally met a neurologist who listened to me and administered several tests, he let me know that I was dealing with Traumatic Brain Injury. I wanted to hug him and his assistant because they listened to me.
Eventually, I stopped disclosing to medical providers that I deal with PTSD and depression and had adverse experiences to several psychotropic drugs.
In those twenty seven years I have heard too many similar experiences from folks I met in support groups, whether it was for mental health or sexual abuse. That damn label of “mental illness”, causes one to suffer even more when dealing with physical concerns because you are ignored. A friend of mine became an advocate because of what her mother experienced. While in a psychiatric hospital her mom was ignored every time she raised the concerns about the pains in her foot and leg. She eventually lost her leg to amputation due the diabetes she was suffering from.
Please pause to consider the amount of people in the prisons, the new holding cells for those labeled “mentally ill”, the vast majority of whom are dealing with significant trauma, and how their needs are being denied.
Many years ago, I forget where and how, but perhaps an event I was part of for the National Center for Trauma Informed Care, Dr. Felitti of the ACE Study invited me to write an article about my experiences with medical providers for the Kaiser Permanente Journal. I was honored because of my great respect for him and his colleagues. Despite many attempts to write the piece, I could never finish it, I would fall apart from all of the feelings that came crashing down. I’m in a better place now, but drafting this has been taxing upon me for the past several days. Being maligned is a hurt with a lasting legacy….especially when your childhood was no picnic.
I know that the majority of those raising the awareness of Adverse Childhood Experiences mean well and are trying to do the right thing, but please know, the language of “mental illness” and its stigma and discrimination, only helps to add one more trauma for so many of us who already have enough ACE Scores.
As an advocate, I want to see people treated better and given help and skills to have a life of peace and joy. Personally, I feel something is missing in the treatment for so many struggling with chronic and complex trauma, especially in most of the mental health centers across this country.
“Nothing about us, without us”. Many of us have known great suffering and trauma, we were hurt in life, we weren’t sick in the mind. Our whole being was impacted by these hurts of life. We need to be in the discussion of how we feel about the label of mental illness, for there is great disdain, still.
A few thoughts from some of my friends and fellow advocates – “a mental health injury, mental health condition, psychological injury, major emotional distress, mental health challenges, trauma survivor, behavioral health issues, distress. A condition which extends us outside our comfort zone would be a “discomfort,” which is a bit less harsh way of saying an “illness”, “disorder”, or “dysfunction”.”
In the attached video, I share some thought on what helps for healing the hurts of life.
– YouTube 2:46 minutes – https://www.youtube.com/watch?v=IwZlcvbwxtQ
Thank you & take care, Michael Skinner