Saturday I attended the third class of NAMI’s Provider Education. Here I summarize, paraphrase, and quote the handouts from the NAMI Provider Education Course Participant Manual 2013. In the third week course we learned about the cascade of secondary traumas which occur when a family is left to cope with mental illness alone.
Kitt’s Note: Stage I was Dealing with Catastrophic Event. Stage II is Learning to Cope. Both families and individuals diagnosed with mental illness need support when coping with the illness.
Cascade of Secondary Traumas which undermine Family Coping Capacity in Stage II
- Families get the most of it: Patients’ rights laws mean that people with mental illness can refuse hospitalization and medication, and reject some (or all) of the necessary care the system provides. This “free choice” not to seek help results in their becoming totally dependent on their families for shelter, financial support and daily sustenance… Without any preparation, families are cast in the multiple roles of doctor, warden, case manager, nurse, police officer, crisis worker, therapist, etc.
- Families get the worst of it: When a family home is the asylum, everybody works a 24 hour shift, 7 days a week. In this isolated setting, behavior problems are magnified and family dislocation is intense… Family anguish is also magnified by the pain and grief of witnessing such terrible, unrelieved suffering in a family member who is not getting the help s/he desperately needs.
- Families remain “in the dark”: Many families have no prior knowledge of mental illness and cannot recognize or understand its symptoms. To them, it looks like their relative is willfully “out of control”, immature, lacking character (lazy, stubborn, weak), taking drugs, or (depending on their religious beliefs) even sinful.
- Families go on emotional overload: Great distress brings feelings of entrapment which introduce the painfully disloyal wish to detach from the source of all the trauma. It is difficult to remain connected to a family member with mental illness who has lost the capacity to reciprocate a family’s love and concern, and cannot appreciate the efforts that family members are making.
- Families get no “rescue” when they turn to the system: When families turn to the system for help, they are routinely told that providers cannot discuss anything about their loved one on the grounds of confidentiality. This convention places families in the excruciating situation where seeking refuge creates more trauma.
- Emotional and physical exhaustion
- Muscle tension
- Decline in Performance
- Signs of Emotional Stress
- Increased Anxiety
- Increase in “Escape” Activities
- Drinking too much
- Signs of Lowered Self-Regard
- Blaming others
Adverse Side Effects of Psychotropic Drugs (by Drug Class)
Kitt’s Note: NAMI provider educators are not MDs or pharmacists (nor am I), so they do not provide detailed medication information. Ask your MD, pharmacist, or reputable sites such as WebMD or Mayo Clinic.
Anti-Cholinergic Side Effects (blocking action of acetylcholine)
- Blurred vision
- Dry mouth
- Gastrointestinal disturbances (nausea/diarrhea/constipation)
- Inhibition of memory, attention, vigilance
- Orgasmic and erectile dysfunction
Anti-Adrenergic Side Effects (blocking action of adrenaline)
- Dizziness/decreased blood pressure
- Tachycardia (rapid heartbeat)
- Weight gain
Anti-Histamine Side Effects
- Substantial weight gain
Increase in Serotonin 2A at Post-Synaptic Receptors
- Diminished libido
- Orgasmic and erectile dysfunction
Extra-Pyramidal Dopamine Blockade
- Dystonia Akinesia/Akathesia (movement disorders)
- Tardive Dyskinesia (neurological disorder)
- Sexual dysfunctions
- Increased risk for new onset Type II diabetes
- Increased risk for cardio-vascular disorder
No one person has all these side-effects, and some of these adverse effects fade over time.
Cost-Benefit Dilemma: Are the potential side effects of a drug (that’s the cost) worth tolerating to gain the symptom relief the drug provides (that’s the benefit).
Stages of Medication Adherence
- Lack of Insight: Over half of those who voluntarily go to the hospital do not acknowledge that they are ill. Anosognosia in schizophrenia and psychotic mania is common and considered diagnostic. Lack of insight seems part of the mental illness process, and may persist.
- Protective Denial: Others realize something is wrong, but are not yet ready to deal with this painful recognition. During this denial period, “accepting” drugs is an admission of illness; refusing them maintains the protective illusion that “nothing” is wrong”.
- Avoiding the Subjective Pain, or Boredom, of Sanity: If someone’s mania or psychosis is grandiose and exciting, medications bring a painful return to the colorless world of “having a mental illness”. Although antipsychotic drugs restore sanity, people complain that these drugs interfere with their sense of perceptions and feelings, making them distant and inhibited.
- Rebellion against Patienthood: Some refuse long-term treatment. Taking medication “forever” is like admitting you are chronically ill and will never get better.
- Reluctant, or Partial, Acceptance: When people work their way through acceptance of their illness on some level, medication non-adherence ceases to be an ever-present worry and danger. They have come to accept the trade-offs, albeit reluctantly.
Co-Occurring Brain and Addictive Disorders
50% of people with mental illness have two co-occurring, potentially fatal conditions – a serious brain disorder and a relentless addictive disorder (dual diagnosis). Both are biological illnesses, both diagnoses are primary and interactive, both require intensive treatment.
When individuals with mental illness become addicted, they can no more resist using alcohol or drugs than they can willfully “cure” themselves from their biological brain disorder. This places an enormous added risk for outcomes which greatly intensify family burden – homelessness, refusal of treatment, violence, trouble with the law, repeated relapses and re-hospitalizations, suicide.
Kenneth Minkoff, MD, specialist in integrated treatment of dual diagnosis, asserts that we must expect substance abuse in mental illness, rather than consider it an exception. Treatment requires trust-building, the establishment of safety, stabilization fo the mental illness, and finally sobriety, with empathy and compassion, rather than moralizing.
The Trauma of Criminalization and Suicide
Jails and prisons have become holding cells for thousands of men and women with psychiatric conditions, while suicide rates among people with mental illness show no signs of abating.
Close to 50% of individuals with schizophrenia attempt suicide, over 10% of which complete it. Rate of completed suicide is higher in bipolar and depressive disorders, while people with panic disorder have the highest rate of attempted suicide.
Just about every other person with mental illness has experienced some kind of extreme secondary trauma, and must bear the added weight of this emotional burden. Understanding this will also explain why so many families act and react the way they do – out of mortal fear that something terrible will happen to their relative.