La Jolla woman tells her storyA recent report by the National Alliance on Mental Illness (NAMI) revealed that Americans’ lack of knowledge about schizophrenia often leads to stigma and poor access to care.
There are several stigmas,” said Shannon Jaccard, communications director for the organization’s San Diego chapter. “One of the biggest is that once you’re diagnosed with the disease, you’ll never recover. We really focus on getting the word out that people recover. (Schizophrenia) doesn’t make the people who they are, but it is part of their lives, like diabetes.”
Twice as common as HIV/AIDS, schizophrenia affects approximately 1 percent of American adults.
According to NAMI, schizophrenia “often interferes with a person’s ability to think clearly, to distinguish reality from fantasy, to manage emotions, make decisions, and relate to others. The first signs of schizophrenia typically emerge in the teenage years or early 20s, often later for females.”
Mary, a 42-year-old La Jolla resident, has lived with mental illness since she was 16. What began as depression was later diagnosed as schizoaffective disorder, bipolar subtype.
Managing her illnessAt age 29, she said, she experienced her first schizophrenic episode, but no one recognized it. Five years later, after seven psychotic crises, Mary acknowledged her diagnosis and began treatment. Today she manages her mental illness with four kinds of medication and counseling.
“The main thing is to control the symptoms with medication,” Mary said.
At her lowest point, she said, she was jailed and presumed to be intoxicated or high by police officials. Delusions and paranoia made her suspicious of everyone and everything, so she would not communicate at all and was essentially catatonic. A mental health professional later evaluated her and correctly identified her condition.
“Jail was a really terrible experience,” she said. “This was the wake-up call that something was wrong.
Mary is very protective of her privacy and acknowledges that she’s encountered prejudice and ignorance.
A multilingual college graduate, Mary’s only day-to-day concession to mental illness is having to avoid stress. She has taken university courses through the Lilly Reintegration Scholarship sponsored by Eli Lilly and Company.
“I’m telling this because I want people to know how bad it is,” Mary said, “but it’s important to know that people do recover. It’s very important to say, ‘I have schizophrenia,’ because the disease does not define us.”
Seeking treatmentConducted by Harris Interactive, the online survey polled the general public, caregivers and individuals with schizophrenia, which affects approximately 2 million Americans. Only a third of those receive treatment.
The organization’s San Diego office provides support, advocacy and education about schizophrenia and other mental illnesses. Family members, friends and caregivers can enroll in a free, seven-week course on schizophrenia, and the organization holds monthly support group meetings.
“In Our Own Voices” is another program that features two people with mental illness candidly speaking about what their lives have been like.
“They delve into what happens to them while in the illness, coping strategies, recovery, dog days,” Jaccard said. “It’s very powerful. It’s a real stigma-buster.”
The local NAMI office also assists with Social Security, housing, employment and other issues faced by individuals with mental illness.
For more information about NAMI San Diego call (800) 523-5933 or (619) 543-1434.