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Victoria Costello

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Family Secrets: What My Son's Diagnosis Revealed About Our Past

Posted: 02/14/2012 7:47 am

At age seventeen, my son "Alex" lost his ability to finish a whole sentence or get even a half night's sleep, or face the other kids at school. The doctors who examined him at UCLA Neuropsychiatric Institute told me he should stay for a month so they could make a proper diagnosis and stabilize what they called his psychotic symptoms.

Having raised two athletic sons I'd been in an emergency room with each of them more than once, but I can't imagine any two words coming from the mouth of a doctor putting more terror into the heart of a mother than "psychotic symptoms." But what I was about to learn would open my eyes to much more.

After I had signed the necessary forms and Alex settled in to his room in the adolescent ward, I tearfully sat down with the psychiatrist on duty (who I'll call "Dr. C") for what she described as a "simple family health interview. With a sheaf of papers on her lap, Dr. C then methodically began to ask me about the health and causes of death of every member of my immediate family going back three generations.

I quickly caught on that unlike the more common version of this exercise Dr. C was fishing not for evidence of heart disease or cancer in the family, but for any mental illnesses suffered by Alex's blood relatives, including those now living and gone. Once I understood our purpose, I was able to quickly dispense with my ex-husband's family and the maternal side of mine -- all seemingly devoid of any mental health issues. After that, the conversation became difficult, the memories more painful.

"Any deaths among your siblings?" Dr. C asked.

"My younger sister Rita was a heroin addict," I began. "She was in and out of jail and rehab for most of her life."

"She is?"

"Dead."

"The cause?"

"Cardiac arrest was how her death certificate read."

"And your father?" Dr. C asked.

"Dad was an alcoholic," I began. "He smoked three packs of cigarettes a day and died of lung cancer at 46."

I didn't, couldn't look at her. I exhaled, thinking that at least now the worst was over.

"And your paternal grandfather?" she asked.

"I'm almost sure that Grandpa Michael got hit by a train," I said, but it was as if someone else was speaking; I felt disconnected from the words and their possible meaning. "My mother said it was an accident."

Dr. C stopped scribbling and looked me in the eye. "Has it ever occurred to you that your grandfather's remaining on the railroad track may have been an intentional act?"

"No, never," I said, stunned by her question. "I mean, not until you just asked me."

I didn't say that, even as a child, I suspected there was something wrong with my mother's story. Every night, when we all climbed in the car to pick up Dad at the train station, I could feel the platform shaking long before I saw the engine peek around the bend. How come Grandpa didn't know a train was coming soon enough to get off the tracks? But I didn't ask that question aloud, not then or at any other time.

That's the tricky part about family secrets. Their contents don't have to be secret at all; as long as everyone agrees not to see or speak about what's actually hiding in plain sight--like Grandpa's likely suicide.

That morning at UCLA was the first time I'd ever considered that this grandfather who I'd never met could have taken his own life, or the implication that follows from it: that there was mental illness in my family's past. Of course, at the time I didn't know that 80 percent of suicides have a severe mental illness. Or that the heavy drinking done by several troubled members of my family was probably an attempt to self-medicate for severe depression, perhaps even bipolar disorder in the cases of my grandfather and sister.

I also learned that, like depression, antisocial behavior runs in families. This means that if certain men (or women) in your family had a tendency to drink heavily, get into car accidents or fights and land in jail -- behaviors that were common in my family tree -- they may have suffered from what is now called "antisocial disorder," a heritable mental illness.

Why does any of this matter? Long-term studies (looking at three and four generations in families) have shown that boys with early conduct problems (refusal to follow authority, cruelty or extreme aggression as a young child) are at a much higher risk for developing adult antisocial disorder and psychosis in young adulthood.

Research also shows that the more close relatives a person has with depression, addictions, antisocial behavior or anxiety, the more likely he is to have one or more of these conditions and acquire it at a much younger age -- often before puberty.

After nearly losing my son Alex to an illness that apparently had been lying in wait in his family history, I've come to believe that those of us who survive such a family legacy relatively intact have a special responsibility to break this wall of silence. Secrets can stay secret for many generations. The trouble comes when your beloved grandson or granddaughter begins to display disturbing symptoms and your adult son or daughter has no idea that certain behaviors or full blown disorders can be traced back one, two or three generations.

The information unearthed from my family mental health history -- especially after I acquired a context with which to interpret it -- became critical for my decision-making around Alex's treatment for the disease that Dr. C ultimately diagnosed as schizophrenia. Alex benefitted by going for treatment at a time (1998) when the concept of "early intervention" for the first symptoms of the psychosis that can lead to schizophrenia had just taken hold. After three years spent in psychotherapy and taking a brief course of antipsychotic medication, Alex was able to return to school and ultimately complete his education at a prestigious art college.

Early intervention and treatment such as Alex's often depends on practitioners having a full knowledge of the affected person's family mental health history. Without it they are at an enormous disadvantage when they attempt to interpret symptoms and make a diagnosis or a recommendation about treatment. As internationally recognized psychologist and pioneer in family studies Dr. Terrie Moffitt writes in the forward to my memoir A Lethal Inheritance, "Family history can make the difference between 'treat now' or 'wait and see.' "

Learning about my family history and watching Alex get better also finally persuaded me to take antidepressants for my own lifelong untreated major depression. It then helped me to recognize and treat my younger son's depression and anxiety disorder -- without making him wait the three decades that I had taken to finally act on what was ailing me. I'm happy to say both my sons are thriving today, as is their mother.

Put simply, knowing the size and type of genetic load you carry, including any mental disorders and addictions in your family's past can be life-saving for your children and grandchildren. Given the fragmented state of today's mental health care system, with so many people lacking adequate insurance coverage for basic let alone quality mental health services, we need to become more informed about our own risks and use this knowledge to advocate for our own mental health needs as well as the needs of those we love.

Victoria Costellois an Emmy Award-winning science writer with articles on psychology and neuroscience appearing in Scientific American Mind and Brain World, and blog posts on PsychCentral.com, Yahoo Health & Wellness and her own MentalHealthMomBlog. With the Mental Health Association of San Francisco, Costello is a speaker and state and federal advocate working to improve the mental health of youth and families. Her latest book A Lethal Inheritance, A Mother Uncovers the Science Behind Three Generations of Mental Illness, is just out from Prometheus Books.

 
 
 

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TheDanaK
#KnowAboutMito
10:02 PM on 02/19/2012
Thank you for sharing this. I am very candid about my depression and the medication I take to control the symptoms. I don't want my niece or son to ever feel shame for getting help should they, too, inherit mental health issues.
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catslegl
07:40 AM on 02/18/2012
Lots of depression in my family too. My father took his life, as did my brother.
My kids have known I see a therapist when I need to. Like I tell them, you can tell a therapist anything because you're paying them to hear it all. There's absolutely no shame involved.
Life is hard- wear a helmet.
10:04 PM on 02/17/2012
So here's a question then, with a lot of people having all of these different mental disorders. Should it be called normal behavior of humans to have these problems? So shouldn't the people who are "normal" (whatever that is) be treated as abnormal?? Seems there are a lot more people with problems than without. Maybe a huge cause of this is boredom and not enough physical, challenging work.
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Poison Snake
08:52 PM on 02/17/2012
Personally, I think that a lot of the accepted thinking and theories in this area of "science" are skewed. Many accepted theories work from the basis that these disorders spring from chemical imbalances that travel genetically or that medication can fix. This just simply isn't the case a lot of times - I'd dare say even most of the time.

I would agree, though, that knowing family history may play a key part in determining how to handle the problem. A lot of these disorders are simply a mishandled response to stimuli - whether by true ignorance of how to handle it, or by a misguided learning process early on. If previous family and parents aren't capable of handling things emotionally or mentally, the chances are that children raised -in that atmosphere- are going to become predisposed to imitating what they see around them and patterns they would accept as "normal" until told otherwise. This has nothing to do with genetics and everything to do with environment, however. Add to that the potential trauma that having family members with these problems can put children through during their formative years, and the lack of success rate this kind of family is bound to have.. it's a mix medication could never hope to truly fix, and genetics couldn't touch.

When dealing with the human mind, some things can be generalized and typified - but it truly is about the individual and situation, and I think science needs to start realizing that more
08:25 PM on 02/17/2012
I deeply appreciate the secrets that were kept in your family. Untill my younger son almost died, I never knnewthe truth. The Dr. asked me questions as yours did, about m family'smedical history. I did not know the answers, so I called my mother to ask her what she remembered. Ony thendid I find out that she had a sister I nevr knew abaout. The sister had died as a child, and was born with some kind of veyr serious medical condition. the sisiter was incapacotd insome wa and was kept at home. Only in my case no one was alive at that could remember any details. Also, it was so long ago that medical records proved missing or inaccurate.Please eveyone, tell the truth. In the long run it is safer to know about a problem than to find out when your child is sick. Too late.
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ldyqtee6
Always pursue personal happiness!
07:32 PM on 02/17/2012
If this is really true, then there's nothing that can be done about inheritied/genetic disorders except learn to function in society despite the issue. Learned behavior can be unlearned if the person so desires. Situational causes can be overcome but only if the person wants to. In none of these cases should the behavior be permitted to go unpunished if the person harms another person nor should it be used as a crutch to allow a person to become unproductive and it certainly shouldn't be used as a platform to formulate new drugs nor force any drugs down a person's throat.
07:30 PM on 02/17/2012
There is always a dark secret affecting pos-generations with this type of disorder, most are genetic like the ones of the royal families in Europe a few years back. Sins that will alter your DNA.
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Nonnie22
11:54 AM on 02/18/2012
Sins?! Really?
07:29 PM on 02/17/2012
Stay away from UCLA! It's wonderful you found a link. Next they will dismantle your lives.
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katzpjz
Behavior, not beliefs, make a better person.
07:16 PM on 02/17/2012
Here is one example that most people do not know about: Dysthymia Depression
How many people do you know or your self does this describe???
Dysthymia is a chronic type of depression in which a person's moods are regularly low. However, symptoms are not as severe as with major depression.
The exact cause of dysthymia is unknown. It tends to run in families. Dysthymia occurs more often in women than in men and affects up to 5% of the general population.
Many people with dysthymia have a long-term medical problem or another mental health disorder, such as anxiety, alcohol abuse, or drug addiction. About half of people with dysthymia will also have an episode of major depression at some point in their lives.
In addition, two or more of the following symptoms will be present almost all of the time that the person has dysthymia:
Feelings of hopelessness, Too little or too much sleep, Low energy or fatigue, Low self-esteem,
Poor appetite or overeating, Poor concentration
People with dysthymia will often take a negative or discouraging view of themselves, their future, other people, and life events. Problems often seem more difficult to solve.
These people never seem to achieve their potential, it is like having a low grade fever. You never can complete all of the tasks in your life. You fight it all your life, you need people around you that are supportive and positive.
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donnabella
someday, my prints will come . . .
02:06 AM on 02/18/2012
With a proper diagnosis, meds & therapy, chronic dysthymic disorder can be successfully managed. I know first hand...
07:09 PM on 02/17/2012
Great article. I wish my parents would treat mental illness as a illness and not it just in your head. It wasn't until after college that I got help for myself, and I'm still working on it and my condition was never bad, but the potential that is wasted if one could get help early. I know I would have made different decisions in my life if I had been treated early. Also just because you know genetically you have a condition doesn't mean your life won't have great potential. Unless you are God, which we are not, everyone deserves a chance.
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jgamble28
ya never know.
07:08 PM on 02/17/2012
My family has suffered from depression. My Grandfather hung himself and my father killed himsellf and my mother suffered for depression too. Unlike them I have gotten help for my depression and am doing good.
06:58 PM on 02/17/2012
In my family I learned early on that if it was something that was unpleasant and "awful" it was not to be shared with anyone. Ignor it and it either goes away or stops existing. It took a cousin on my Dads side doing the familyhistory to learn a lot of hte secrets that the family tried to keep buried,not sharing the info with themembers that should have been told so that they would be on guard for some conditions....I chalk it up to ignorance that some of the older generations have and think is for the good.
06:52 PM on 02/17/2012
So she discovered what has always been true in saying, "The apple doesn't fall far from the tree"
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NOVEMBER1944
06:50 PM on 02/17/2012
My husbands first wife also had this and it did'nt sow until age 23 after 3 kids and her parents knew that she could get this as 2 of the mothers sister also had it. They gave this poor woman shick treatments and she was in and out of institutions for years.Only one of my 3 stepsons had children because of the fear of having a child inherrit this disease.. It was so sad. People need to be educated about mental illness. It should start in high school or even grade school so it can berecognized and maybe life can be easier for those afflected with the disease and we tend not to fear what we understand.
06:38 PM on 02/17/2012
It's important to let the children know early about addictive personalities in the family history. I didn't tell my 14 year old that Grama on one side and Grampa on the other side were long term alcoholics that had stopped in later years. I was going to tell them when they were older.

Tell the kids early, by age 12. Because kids these days experiment at 13, 14, etc. Those with addictive personalities get hooked quite quickly the younger they are, in as little as a week, per the police liaison.