Finding the Real Person Underneath the Diagnosis,

the Despair, and the Disability

Courtenay M. Harding, Ph.D.

WHAT ABOUT THOSE PEOPLE WHO SEEM TO STAY IN SERVICES?

• INCORRECT DIAGNOSIS• MEDICAL COMORBIDITIES• CO-OCCURRING DISORDERS NOT TREATED

SIMULTANEOUSLY• ADDITIONAL NEUROLOGICAL

IMPAIRMENTS• UNTREATED FOR LACK COMMUNITY

KEEPING BEHAVIORS• IATROGENIC EFFECTS OF TREATMENT• DEMORALIZATION & LOSS OF HOPE

WHAT ABOUT THOSE PEOPLE WHO SEEM TO STAY IN SERVICES?

NOT NECESSARILY VIRULENCE OF ILLNESS ( ≤5%)

• PERSONS WHO REQUIRE SOCIAL CONTROL (NGRIs & SEXUAL PERPETRATORS)

• LONG STAY FORENSIC PATIENTS FOR MISDEMEANORS NOT NEEDING SOCIAL CONTROLS

• UNRECOGNIZED AND UNTREATED TRAUMA• AXIS II BEHAVIORS MISINTERPRETED AS

CONTINUING AXIS I PROBLEMS• LACK OF REHAB OPTIONS &

OPPORTUNITIIES

WHAT ABOUT THOSE PEOPLE WHO SEEM TO STAY IN SERVICES?

• WE NEED TO TAKE A SECOND, THIRD, AND FOURTH LOOK

• WE NEED TO UNDO THE DAMAGE DONE BY THE SYSTEM

• WE NEED TO DO MUCH BETTER FOR THE “OLDER SEEMINGLY CHRONIC PERSONS”

• WE NEED TO REMAKE OUR SYSTEMS TO REDUCE FUTURE CHRONICITY

Some ideas about the recovery process

WHAT DO PEOPLE THINK THAT THEY ARE RECOVERING FROM?

• Loss of self, connection, & hope • Loss of roles and opportunities • Devaluing and disempowering programs,

practices, and environmentsPrejudice and discrimination in society

• Internalized oppression and shame(Spaniol, Gagne, Koehler, 1999)

Phase I- Overwhelmed by the…… disorder

• “Daily life is a struggle”• “Tries to understand and control what has

happened”• “Feels confused, disconnected from others” • “Often feels out of control, powerlessness in

life” Spaniol et al , 2002

Phase II- Living with disability

• “Has come to terms with disability and feels confident about managing it”

• “A stronger sense of self and feeling of confidence about managing it and having some control.”

• “A sense that one could have a satisfying life with the disability”

• Spaniol et al, 2002

Phase II- Living with disability

• “Utilizes coping strategies and assumes meaningful roles”

• “Consistency and security in the people, roles, and environment”

• “But still feels limited by disability” • Spaniol et al, 2002

Phase III – Living beyond the disability & reclaiming a life

• “Feels well connected to self and others in living, learning, and working environment experiencing a sense of meaning and the purpose in life.”

Spaniol et al, 2002

It is extremely hard work to bootstrap one’s self into recovery

process and takes time

RECLAIMING A LIFE TAKES PASSION, ENERGY AND A BELIEF THAT IT MIGHT BE POSSIBLE

An active self Taking stock Relying on self Finding supports Learning to love Increase self-esteem Tolerance/ Acceptance

Building on reality Better coping Self-monitoring Spirituality See a process Reclaim hope

Spaniol, Gagne, Koehler, 1999

Brainstorming

A person says they have no goals. What is going on here?What do you need to light a fire under them?

What If A Person Has No Goals?Davidson & Ridgway

• Is person demoralized?• Has person been socialized into “learned

helplessness” due to uninterested system?• Has person become afraid of taking risks?• Could this person have a co-occurring

depression?• Has clinical team established trust?

• Are there neurocognitive or communication problems getting in the way?

Usual Areas Reviewed

• Diagnosis & s/s• Possible deficit

syndrome• Medications & side

effects• Medical problems• Neurocognitive

status

• Street drug use• Behaviors• Personality• Sex differences• Social supports• Cultural issues• Trauma history• Coping strategies

COMPOSITE PROFILE OF STRUGGLING PERSONS

DepressedDelusionalAssaultiveSuicidalManipulativeDrinking too much caffeineSmokingPoor social skillsDemoralized

• Acting out• Angry• Unpredictable• Displays poor hygiene• Self injurious• Unpredictable• Refusing treatment• Unmotivated• Coping with serious

medical problems

But before someone gets going, they need to know that there

might be a possibility that they might be special, that they might

have a way to contribute and there might be a place for

themselves in the world

Started looking for other things

• Strengths• Interests• Early goals• Hopes • Dreams

• Helpful behaviors• Personality styles • How did the

person get into such a muddle?

SOME OF THE MANY STRENGTHS AND TALENTS FOUND WHICH WILL HELP FIND THE WAY OUTSIDE

• Intelligence• Sense of humor• Charming• Persistent• Musical talent• Artistic• Work histories• Contributing to groups

• Feisty• Cooking skills• Neuropsych strengths• Cultural heritage• Athleticism• Spiritual• Educated• Personable

THE GOAL

• Help to change someone from thinking that they could only be a patient to

• A person with a life and hopes and dreams and perhaps diminishing episodes of psychosis

SOME OF THE SUGGESTIONSTO SURPRISE AND ASTONISH

BASED ON THE PERSON’S DREAMS

• “Hyperscore”• Piano playing• Setting up a

mentoring program• “Scientific

American”• Training guide dogs

• Russian history• Jewish traditions• Connections to the

Greek Orthodox community

• Human rights commission

MORE OF THE SUGGESTIONS

• Definition of a name• “VideoEye” for low

vision• An art studio of her

own• Become a

psychologist

• Greek history• Hidden messages in

records• Celebration of other

holidays than Christian ones

• Social learning

Some Peer Suggestions on What Helps

• Local Peer-run Crisis Centers NOT Hospitals• CMHCs NOT jails• Supported Employment NOT adult day care• Peer/doctor medication reduction teams• Peer providers as 10% of Mental Health Center

Staff• Reduction of micro aggressions by staff• Personal Care Attendants NOT nursing homes• Personal Medicine , Common Ground

– (corinnawest.com + Pat Deegan)

Words of Wisdom from Manfred Bleuler

• “What is effective in the treatment of most schizophrenic patients is also effective, and decisive, in the development of the healthy individual; clear and steady personal relations; activity in accordance with one’s talents, interests, and strengths;

Words of Wisdom from Manfred Bleuler con’t.

• confrontation with responsibilities and even dangers; and, at the right time and in the right rhythm, rest and relaxation.”

– Manfred Bleuler AJP, 138:1403-1409 (1979)

THE SECRET

• Surprise and astonish by showing the person that you can see a real life for them

• Interest them in things that will enhance their sense of self

Looking for practices which match up with an individual’s clinical

strengths and needsIndividuals want to be healthy,

have a home, a job, friends, a date for the weekend, and social

justice