"I think the most important thing is to accept the disorder like any other medical disorder, that treatment works and that recovery is not only possible, but probable as well." - Individual with schizophrenia interviewed for a new NAMI study.
A special session on "Schizophrenia: Public Attitudes, Personal Needs" was held on Saturday night at the convention in Orlando, Florida. A panel of peers and family members, moderated by NAMI medical director Dr. Ken Duckworth, spoke about the findings of the Harris Interactive survey of 250 individuals who live with schizophrenia, 250 family caregivers, and the general public.
Schizophrenia is twice as common as HIV/AIDS, yet it is often misunderstood. The good news is that 85 percent of those polled recognize this disorder as an illness, and 79 percent believe that with ongoing care, people diagnosed with schizophrenia can lead independent lives.
However, 49 percent of the general public had discomfort dating someone who has received treatment, and the numbers increase if a person isn't in treatment; 80 percent wouldn't date someone in that case. 80 percent would feel uncomfortable working for such a person, and 77 percent would also feel uncomfortable working with an untreated individual.
As the survey makes clear, people are inclined to "distance themselves" dramatically from people not receiving treatment Two million Americans live with the illness, yet only a third receive treatment. Most startling, there is an average delay of 8.5 years between the onset of symptoms and the beginning of treatment for schizophrenia.
Striking at the threshold of adulthood when women and men in their teens and 20s are in school, entering the workforce, beginning families or making other formative choices, a breakdown has life-changing consequences in the form of lost or damaged relationships, disability, academic failure, unemployment, jail or prison and other conditions.
Of the group of individuals living with schizophrenia who were polled, 56 percent received Social Security Disability Income (SSDI); 51 percent Medicare; 45 percent Medicaid; 40 percent food stamps and 34 percent Social Security Income (SSI). 59 percent under the age of 35 reported decreased engagement in job searches. 63 percent have accepted money or financial support from family members or friends; 56 percent have depended on them for housing.
People living with schizophrenia nearly universally say that access to a psychiatrist (95 percent) and medication and treatment (96 percent) are most helpful to improving their condition. As well, 93 percent believe more effective medications and treatment, as well as better private health insurance (85 percent) would help improve their condition.
The NAMI special session panelists take on the findings:
A peer, Laura Halper, from Boston, MA who graduated from Duke University, weighed in. She stopped dating, stopped going to parties or hanging out with friends, and when she got sick, Laura's IQ dropped to 74, borderline mental retardation. "Subway stations were a torrential place for me, like funhouse mirrors," she intimated. Coin-op laundries were especially problematic, as she had forgotten the basic routine of how to wash clothes. Laura suggested there's a delay in treatment because of a lack of communication. Paranoid ideation leads to a lack of trust. How do you seek trust from someone who cannot trust?
