I face the daily challenge at my urban center in Hartford, Connecticut of working with young adults (18-25) coming out of the juvenile system into adult outpatient care. Most of these youngsters come to us on multiple medications of all classes. Almost all have stories of trauma, abuse and neglect going back some generations. Almost all carry psychiatric labels of bipolar or schizoaffective or personality or behavioral disorders. Very few of them have ever been told of the long-term effects of the medications they have been prescribed.
I see them with their prospective clinician for intake, a complete “psychiatric evaluation,” which for me means “getting their story.” They come with volumes of records — which I don’t view before meeting with them. I want to meet them “where they are at,” and form my initial impressions from my initial contact with them. At least I will record in their record something I have rarely seen in all the records I subsequently review, i.e; their story — their narrative, as told by them, to me. They are the authors of their experience.
Most of the time I simply ask them, after some introductions, to tell me about “Lydell” or “Saphonia.” Most of the time, even with this broad open-ended question, they get into their story, which they then guide me through. Along this initial journey together we develop some rapport and get to know each other.
I work on a team with six clinicians, two MD’s and 30 case managers, with a budget coming directly from our state legislators which was increased after the Sandy Hook tragedy. Of course “the mentally ill are at the core of the shootings,” so a quick fix by the folks at the Capitol — as misguided as it is — provides more money for our services, and activities provided to the young adults.
Once the folks I work with “settle in” and become familiar with all that is offered here as well as in the community (Toivo is a holistic wellness center, high on my referral list). We have talks about medications. I first get from them their experiences on medications and their views of medications as part of their life, their “treatment,” etc., and how they want to proceed. Most have always struggled with being on medications and what being on medications means to them. Usually is means “I’m sick, have a long term brain disease, and need them for the future.”
Most are at least ambivalent about what they have been told. Others more feisty and rebellious, with greater zeal and spirit, want to come off medications. “Now that I’m 18 I can decide for myself right? I’m not a ward of the state right?” Or, “I’m no longer mandated because I’m a minor, right?” Yes to all these questions.
For those who want to work with me coming off medications, we set up a long-term plan of slow tapering. I warn against the ravages of “cold turkey” withdrawal, and warn how others will react to their sudden overwhelming (most of the time) expressions of affects that have become dysregulated. I discuss with them how the medications might tranquilize their feelings. Most have already expressed to me — when they begin to trust me (since I’m an MD and will hospitalize them if they don’t take medications: they are scared shitless about the power given to MD’s, and rightly so) — how numb they feel at some of the doses they were on.
Then I talk them about the “bad news.”
What is the bad news? Most of these youngsters have been on medications since as early as ten years of age. Most of their behaviors were under medication control while they fought their way through the DCF system of foster homes and residential placements. Most have had multiple dislocations, never staying long enough in one place to form secure safe attachments with a person who will just listen and be there for them.
(Such persons exist. They are precious folks, scattered throughout the system. One wish of mine is to gather them all up to be part of an alternative network. But I digress.)
So; most have never had the opportunity to feel their passionate feelings — to express them, process them, and cope with them. They have become dependent for affect regulation on medications, and the entire part of the brain designated for that function is undeveloped. So, then; how else do we learn to regulate our affects? You know; with that other affect regulation medicine. It’s called safe, secure, consistent, interpersonal relationships. That stuff we did with our kids. You know; all that pain and heartache, fear if not terror, not knowing how things are going to work out, staying with it no matter the provocations to give up… you know; all that easy stuff! Well how does that all play out in an urban mental health center?
To come off medications is an arduous process requiring the people be ready to undergo some painful struggles with the youngster who is going to feel it the most. The kid whose medications is reduced comes home and gets angry with his brother or mother. The first thing said to Johnny is “did you take your medications?” Now that Johnny can react to his surroundings — which at times might not be all that supportive — and expresses his disagreements, it is seen as part of his “mental illness.”
This is no different than at the mental health center. You would think not, but it is true. Although it is better now than 20 years ago, when I began doing this. Folks then were angry with me for not caring about my clients who were “getting worse since YOU lowered the medications.” The clients began expressing and actually communicating the feelings — perhaps leading to some of the initial overwhelming conflicts — that they had originally not been able to contain in their sensitive souls, and which had came out in disguised “psychotic” ways.
I try to work with staff to tell them what I tell the young adults; that most medications act as an “emotional blanket” (to take a positive approach) covering up intense feelings, thereby quieting them to some extent. This can be useful at the onset of an erupting emotional overwhelming crisis. Unfortunately, once the crisis passes and folks need to process what they went through, people are usually not available long enough and with enough fortitude to go through the next phase. Rather than intense listening and empathic immersion and presence over time; people simply stay on the medications. ”SEE? THEY WORK AND YOU NEED THEM.”
Thus, the early development of the so-called “chronic patient.”
If we are to avoid the long-term consequences of these medications that we know lessen the likelihood of recovery; we must give every person so desiring to, the opportunity to follow a different path. As the blanket lifts with each dose reduction we have to expect “emotional storms” to brew as the youngster is exposed to the stress of life, to the conflicts never faced unprotected, as they experience “being in the world” with all their feelings, passions and spirit. We have to expect the youngster might be overwhelmed by the intensity of life “flooding in,” not having the necessary coping that was denied them in the years past. Now if they allow us — hopefully with trust secured — to “be with them” in this new crisis, a new opportunity for growth for all of us develops in the space between us.
This is the work. This is the struggle. Since it is all so uncertain as to outcome. We are in unchartered waters without a compass — only the “stars” to guide us, which actually is faith in a process of interpersonal healing. We are triggered by all the pain, tumult, and trauma coming forth, and have to care for ourselves and depend on each other. So our interpersonal relationships and support for each other is on the line too. Can we handle all of this?
It is all too much. I try the best I can with the team we have, but the institutional rigidities, constraints, fears of liability, and risk are major impediments. Additionally, the “love affair” for “evidence-based” approaches to treatment of so-called mental disturbances, the monolithic nature of the medical model, and the primacy of the pharmacological approach only add to the roadblocks. Cushman and Gilford define evidence-based as “an abhorrence of ambiguity, complexity, uncertainty, perplexity, mystery, imperfection and individual variation in treatment” To that I add an abhorrence of improvisation. No wonder “evidence-based” is the way. Tolerating such affects is not part of anyone’s job description.
I actually went to HR 20 years ago requesting that we put in the job description of mental health workers just such abilities. They laughed… Lovingly, I decided.
As best I can, I inform those I’m privileged to be with about alternatives developing in our community. I encourage visits to the peer-run wellness center, hearing voices groups, as well as alternatives to suicide groups. I inform them about the Maastricht Interview for hearing voices if they are interested. I encourage the “fighters” to consider going to Recovery University — part of the wellness center — to become peer advocates and peer support folks. Hopefully within the next 18 months we will open Connecticut’s first peer respite, and begin developing peer-run Open Dialogue teams, too.
Alternatives to the current institutional or agency models are here and coming forward. I am very hopeful.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.