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Monday, August 1, 2016

Family education for coping with mental illness: We just had to do it ourselves

Joyce Burland's story:
     My sister became ill with schizophrenia in 1960, when she was 30, as a mother with 5 young children.  I was a college graduate, and knew my way around research.  But as hard as I tried, I could fathom nothing that was helpful for us.  At that time in America when people became ill with mental illness, the worst outcomes happened.  There was nobody there to counsel or confirm or console, nothing!  It was at the height of the family blaming era.  So the idea that families could teach other families was unheard of.
     My sister escaped having her brain skewered with a needle [for a lobotomy], but she went into Freudian therapy, which alienated her from her family almost immediately, as she was very psychotic.   I just watched the whole thing go down the drain, which was tragic!  She rejected her husband  since she had delusions about him.  The kids huddled, and my mother took over as grandmother.  Things were full of tension because of the animosity on my sister’s part.  

     For years and years she was out of touch with all of us in the family, and the kids had to struggle all by themselves.  When Mommy got to be 80, I called the five of them to ask them to come to her birthday, and three of them showed up.  I took them out to lunch.  I was frightened to approach the subject of their Mom’s illness after so many years apart, but I pressed on, asking them,  Do you all know your mother has schizophrenia?  With some relief, they said they knew something was wrong, but no one had ever given them any information or guidance. How could this silence happen in America, where in other medical realms so much progress was being made?

     Then in 1981,my daughter became ill.  There was still no guidance, no compassion, no counsel.  I had to stay up all night with her in the hospital, and at 4 a.m. was obliged to do a psycho-social interview with a resident.  He said she now had schizophrenia because her “infant psychosis” was breaking through.  I looked at him like he’d come from Mars, recognizing instinctively that this was just plain crazy.  It was from my neglect of her, early in her life, he added!  I don’t know when outrage matures and inspires action, but that was one key event that later drove me to write Family-to-Family.

     At that point,  I’d never heard of NAMI [National Alliance for Mental Illness], but I did get a suggestion from a friend and called Dr. [E. Fuller] Torrey, who’d written Surviving Schizophrenia.  He’s a radical activist and wonderful psychiatrist.  When his sister got schizophrenia, he realized how abandoned families were, and how badly the mental health system treated people with mental illness.  He advised, if you make a call to someone and they can’t help you, insist they give you the next lead.  I spent two years on the phone trying to find resources to save my daughter’s life.  She didn’t have any insight into her illness and I did not get a shred of useful professional guidance beyond Dr. Torrey’s kindness. It was just hideous!  

     I began to understand how many people had gone through the same nightmare.  How can this be America?!  There was no professional initiative, no one saying, Oh gosh, we have to educate families because they’re the first responders.  Family caregivers were so forgotten and unheralded and sacrificed.  I’d gotten my PhD in Psychology at age 51 or 52, but psychology had all the wrong answers. 

     I said, This is unacceptable.  If the providers in the field won’t do this, we will have to do it ourselves. I felt like I had a tailwind from my justifiable rage at what we’d gone through as a family, and concern for all the other similar stories I’d heard. And I had absolute faith that family caregivers would be superb teachers.  One psychiatrist complained at a meeting that we were taking over the store.  I said, How can that be when there was no one in the store!  

     In 1991, NAMI-Vermont got a grant for $15,000 from NIMH for family education, but I’d started writing the course even before that.  I trained the first teachers in Vermont, and kept writing later segments of the 12-week course while they were teaching it.  Talk about inspiration and energy behind an idea!  It was so all-consuming, that my husband had to say, I don’t want you to cross the street until you finish the course!
     Now, 25 years later, we have hundreds of volunteer family member teachers across the country.  Every teacher has some degree of the same story of isolation, being ignored and disrespected at some point, though in all other illnesses, people are kind and concerned.  It was SO different for people with mental illness.  By then, I’d seen 20 years of the burden on my own family, the weight of continual stress on my mother and father, the impact on their finances and their dreams of a happy family future.
So this is the story of many Americans who refused to accept the rejection and discrimination they faced from the psychiatric community, who found the courage and resolve to turn the prevailing myth of family dysfunction on its head and forge a lasting opportunity for family caregivers to learn how to manage effectively and regain balance in their lives.     

     Moreover, we didn’t stop with Family-to-Family.  NAMI now has the Provider Education Course which I wrote in 1996 , where a team of family members and individuals with mental illness go into mental health agencies and talk to providers about the realities of mental illness.  I also wrote a  program to help teachers recognize early onset mental illness in children.  In fact, NAMI now has ten free peer education and support programs, all directed by family members and people with the lived experience of mental illness.

     Helping families in crisis, giving them something to use while they’re going through the demanding and mystifying elements of mental breakdown, is priceless.  We help them see their stricken loved one as a hero rather than as a lost cause.  Family members who take the course say it gives them more understanding and compassion and concern, and an awareness of the heroism it takes to live with these illnesses.  All that improves the relationships in the family.

     This program also ends up being enormously healing for the teachers, using the pain they have lived through to be helpful for other people.  That’s the last stage of coming through trauma:  giving it meaning and significance.    We’ve never lacked for teachers.  Everywhere I went there were 20 people saying, I want to teach this.  It has made for me a wonderful kind of missionary life.  

     I just had to light a candle and go forward, since it was all blackness!  The families responded.  You have to give a huge vote of appreciation to the families that keep this going.  That’s the miracle here, that people said, I’ll pick this up and do it.  I don’t know how many organizations like NAMI there are, for which people would go through the demanding training for teachers, give up 12 weeknights to teach the course, and turn in their evaluations.  NAMI members are so dedicated, so ready to help others facing the trauma of mental illness.
Ken’s Advice: NAMI’s Family to Family Education Program  has helped more than 300,000 family members, for free.  Recommend it strongly to your friends who have a mentally ill family member.

Read a story about a very different patient education class.

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