Advocates Seek to Change Focus in Treating People with Behavior Problems

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"Stop Calling us Mentally Ill" hopes to change social perceptions by pointing out that every person with a behavior problem is also a family member. In addition, the group hopes to highlight the often lonely plight of family caregivers, faced with shouldering the burden of caring for that relative, often at a high personal cost.

"Stop Calling us Mentally Ill" ( is drawing attention to family caregivers of the mentally ill. Bound by blood, they care for family members through erratic behavior and often painful, disorienting medical treatments. While the patient suffers the most, care takers suffer right alongside them.

"I am the care taker for my son, who was diagnosed 10 years ago," said Ayala Karsh, founder of Stop Calling Us Mentally Ill. "The rest of the family abandoned him, including his father, who lives in the same city, as well as his sister and brother. They do not speak to him or see him -- just pure abandonment as if he does not exist. The pain my son suffers from this abandonment is excruciating and brings on more symptoms of delusions, hearing voices, lots of anger, and keeps him from getting well."

Karsh's personal pain lies not only in the changes she sees taking place in her son, but also in the heart-rending effects surrounding treatment, living conditions and public perceptions.

"As an informed parent, I have to deal with the revolving door of the hospitalizations, forced commitments, forced drugging, especially with the Atypical anti psychotics," Karsh said. "Then, of course, there are court ordered stipulations that he must take his drugs in or out of the hospital, or he is involuntarily committed again. The pain of watching a psychiatrist prescribe a cocktail of medications that almost killed him was unbearable."

During one hospitalization, Karsh's son developed neuroleptic malignant syndrome, a particularly rare disorder often caused by an adverse reaction to psychiatric drugs.

"The psychiatrist did not recognize the symptoms, which can lead to death, and released him.," she said. "It was only when he saw his private doctor, that she recognized the symptoms and cut the dosages and of the medications, and took him off many others."

Karsh implores parents to reflect on the pain of having a sick child and relate to the pain of a caregiver of a child with a behavior problem. Often, even where they are choices about treatment options, those choices amount to no choice at all.

"I have a choice of having my son live with me and take all his anger out on me, or to put him in a group home or board and care," Karsh said. But many places offer a lack of care and supervision, cheap and unhealthy meals, or programs that constantly refer to the people in the home as mentally ill.

"The pain and the guilt I feel are overwhelming," she said. "After a short while, I bring my son home, again watching him as he suffers, and I suffer with him. More pain, more tears and no support system, as even old friends stay away. Oh yes, there are support groups, which sometime help. You can relate to all the care takers in the room as you know what you are feeling."

While millions of people suffer from symptoms such as hearing voices, thinking someone is out to get them or delusional thoughts, many more people are their care takers, who sometime suffer from broken marriages or live day to day in sad families.

"Because of the guilt the care taker feels if he or she complains, there is not enough attention paid to this group," Karsh said. "More care takers need to speak up and have the right to tell their stories and share the pain of caring for someone who has an illness that science has not found a cure for."

Karsh has found a measure of hope in Orthomolecular doctors, who believe deficiencies of metals and vitamins can cause the symptoms of behavior problems. They argue these symptoms can be corrected with the right combination of supplements derived from testing the person's levels of the metals and other disorders in the body.

"Society needs to honor the care takers and realize that they too suffer with pain, have their lives changed, and sometime have no life of their own," Karsh said. "Speak up, don't be ashamed to talk about your sick loved one, empower him or her and don't let society stigmatize them and cause them to feel like sub humans."

For more information about Karsh's group, please visit


Ayala Karsh


Stop Calling Us Mentally Ill


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