Don't fight mental illness alone

This is one young man’s story of coping with the thought of fighting mental illness alone. It appeared in The NAMI Advocate, Winter 2014, page 25.

“I was diagnosed with schizoaffective disorder in 1999. I was experiencing mood swings, delusions, and hallucinations about evil spirits. I felt like I was very much alone. There are times I still do think I am uniquely singled out to suffer.

But through the help of NAMI and other support groups available to me at my mental health behavior provider, I see clearly that the focus doesn’t have to be on myself anymore. Many people come to the meetings and get to share their difficulties, which are a lot like mine. My meds help me a thousand times over, as well as pastoral care, counseling and case management. When I struggle now with feeling like I am alone, I usually am able to use some of the skills I’ve learned in the support group to realize I am not alone. For example, cognitive behavior therapy (CBT) has rewired my thought processes in a positive way, bringing hope and confidence which bring both balance and happiness to my life.

The fight is real. Those living with mental illness need real intervention-from meds and doctor’s visits to attending NAMI groups and classes to see our own struggles through someone else’s life. Often, counseling should be added to the regiment, because counseling and meds, at least in my experience are the primary means for getting better, being able to copy and to gain confidence over our disorders.

When we think we are alone, we start ‘psyching ourselves out’ and obsessing on top of the original disorder.  Hope diminishes, and despair takes over. Deep depression takes a place in our minds, which adds to the confusion we are already experiencing.

The best places to go from there is some kind of meeting-be it NAMI, support groups offered through your behavioral health office or support telephone lines. I’ve even used the emergency line offered through our behavioral health office just to talk. I think they know me personally.

I always feared as a very young boy that I was going to be affected by a mental illness. I read about it in our old encyclopedias we had at home and the notion just scared me. I grew up and found myself fighting myself all alone, unable to express what was really going through my mind-until the day I got treatment and support. Then I knew I could cope with my disorder.”

Our gratitude goes to this young man who is brave enough to tell his story. It gives us HOPE.

"Just get over" the mental illness?

This story was printed in the NAMI ADVOCATE, Winter 2014, page 23.

For years, I was told by friends and family that I was overly dramatic and overreacting to situations around me. I was told to “just get over it” and “be normal.” For all those years, I tried desperately hard to act like everyone around me. Yet I always realized that they had something that I didn’t have. They were able to process events and not get upset. They weren’t changing from extremely

happy to super sad in a matter of hours. They didn’t think about killing  themselves every moment of the day. They didn’t get relief by cutting up their bodies. Something was different, and I just couldn’t figure it out.

In college, I decided to major in psychology. We learned everything there is to know about the human brain and all of the chemical imbalances that go along with different disorders. My sophomore year, I had my first incidence with suicide. Before I was able to do anything, my friends caught wind of it and called the police. From that day through the next few years, suicide was about the only thing on my mind. The police were called intermittently during these years, but no treatment or counseling was ever sought.  Besides, I had found a different outlet for my pain: cutting and alcoholism.

My drinking quickly evolved into full-blown alcoholism within weeks of taking my first drink. At the time, I knew that alcohol was basically the only thing that was keeping me alive. Then February 15, 2013 happened.

That morning, I went to work chemically altered with a lot of the new anti-anxiety pills that were just prescribed to me. I was going to kill myself that night. I had given away my dog, packed up my house, and got everything all set. Somehow my boss caught wind of it and ended up calling the police. I was sent to a special psychiatric hospital, where I stayed for about a month.

There I was officially diagnosed for the first time in my life with borderline personality disorder and bipolar II disorder. However, I did not want to admit that I had a mental illness. After being told this information, something snapped in my brain and I began getting violent and ended up on four-point restraints.

(After repeated hospitalizations, more restraints, and many more medications, Ashley’s journey took a more positive turn.)

Finally, I was sent to a local hospital with a psychiatric unit after another attempt to kill myself. I was blessed with being assigned an amazing psychiatrist who finally figured out my medication. He took me off the boat load of medications that were basically just sedating me and put me on a mood stabilizer and an antidepressant. Suddenly, life was beginning to feel easier to handle. My moods weren’t swinging from one extreme to another, and I no longer wanted to kill myself every day. He set me up with a community agency that would provide me my medication and therapy on a long term basis. I was able to return to school and pursue psychiatric nursing while obtaining a new job. I was finally beginning to function like those “normal” people that I had admired ever since childhood.

Throughout my journey, I have been hit with many negative views and criticisms about what I was going through. The stigma of having a mental illness began to flood into my life and affect everything. However, thanks to NAMI’S Peer-to-Peer classes, I began to understand that I wasn’t alone in the fight against stigma and that together we can enlighten the world one person at a time.Its danger is not to be underestimated. It is the leading cause of disability in the United States and other developed countries. If left untreated, it can lead to suicide.”

The good news is it is a highly treatable illness.

A closer look at symptoms reveals these characteristics of mood: sad or very irritable; cannot be cheered up; loss of interest in pleasure in daily activities.

Among physical symptoms are insomnia or sleeping too much; change in appetite or a significant unintentional change in weight; being visibly slowed down or agitated; extreme fatigue and lack of energy; decreased sexual drive, catatonia (psychotic stage).

Behavioral symptoms include decreased motivation; decreased task performance; withdrawal and isolation; loss of gratification in effort; lack of attention to hygiene and appearance; no desire to talk, interact, socialize; grossly disorganized (psychotic stage).

Symptoms associated with thinking include accusatory, self blaming thoughts; feelings of worthlessness or excessive guilt; having very low self-esteem; marked indecisiveness or the inability to think, remember, concentrate; recurrent thoughts of death, suicidal thoughts, suicidal plans; delusions (psychotic stage), disorganized, incoherent speech (psychotic stage).

Symptoms involving the senses are hypersensitive to noise, light, stress;

hallucinations (psychotic stage).

Psychosis is a break with reality in which the person sees, hears, or feels things that are not there.  Psychosis can be manifested in bipolar disorder, schizophrenia, as well as depression.

Abraham Lincoln gives a glimpse of the depths of his depression when he said, “I am now the most miserable man living. If what I feel were equally distributed to the whole human family, there would not be one cheerful face on earth. Whether I shall ever be better, I cannot tell. I awfully forbode I shall not. To remain as I am is impossible. I must die or be better, it appears to me.”

Because the physical signs of a major depressive episode can mimic other illnesses of the thyroid and adrenal glands, and illnesses like MS and heart disease are known to cause depression, these physical disorders need to be ruled out. It is absolutely essential for people experiencing depressive symptoms to ask for, and get, a complete physical as part of their diagnostic work-up.

It is important to know there is good treatment for depression. A person should not try to “tough it out.” There is HOPE. Treatment works.

Mental illness and terror

The people who live with schizophrenia and other illnesses with psychosis are our heroes. What they have to deal with is terrifying and beyond imagination.

The following is “David’s Story,” an excerpt from Private Terror/Public Life by James M.  Glass.

It’s like all my cells are exploded over the universe, and I live in each of those millions and millions of nuclei shooting in every direction. In the midst of all this, how could I possibly deal with the concrete, even tie my shoelaces, much less find my shoes?

I convinced myself several things were happening: Unrecognizable voices invaded my ears; transmitters had been planted in the ceiling; everyone on the Hall spoke about me; my behavior was watched and discussed by staff; nursing reports, patients’ journals, were filled with hundreds of pages describing my appearance and movements; spies were sent into the Hall exclusively to keep track of me and to report any suspicious behavior to the hospital administration; therapists ignored their own patients and spent hours in endless discussion, looking at the ramifications of my case; TV cameras, hook into the walls taped my facial expressions; every morning, around 3 a.m., three thousand spotlights aimed directly into my eyes; staff prepared elaborate strategies to humiliate me, to expose me and leave me naked in the front Hall; killers hid behind closed doors and waited until night to sneak into my room; food poisoned my insides and rotted out my intestines. Lying down, my body became so brittle I felt it cracking into a thousand pieces; at night, my roommate fed on my blood. Not exactly sane thoughts. In my frame of mind, if I were to stay alive, I had to be attuned to every movement on the Hall.

I hear this voice sometimes. I call it the “maelstrom of manufactured criticism” because it tears at me, rips my identity into shreds, and slices away at everything I am. The verbal abuse never lets up. It goes on and on for hours. Nothing outside touches me when it’s here: I refuse to talk to anyone; I sit, stare, smoke cigarettes until the voice leaves.

Nothing really stops the madness. I rarely change clothes; hygiene and meals become too much. And I have more important things to do than be bothered with my nutrition or cleanliness. Contact with people seems closed off. I lose interest in what happens on the Hall. I forget what day it is. Something as simple as selecting a shirt paralyzes me. That’s what begins my psychotic episodes, little things, nothing more dramatic than trying to find a shirt. It’s like this huge problem overtakes you: moving towards the closet, opening the door, searching through the rack. Each step of the process is like climbing Mount Everest, so you say to yourself, “Why bother, let it be, stay with the one on your back. Little things are magnified a thousand times, and what happens inside your mind takes on much greater importance than your own hygiene or appearance.”

The NAMI Family-to-Family class teaches the importance of patience and understanding in supporting a family member with this illness. They are taught how the brain works and malfunctions. They come to understand that no one is to blame for this illness or its effects. They are given information about how to work with the psychiatrist and are given hope in light of the new medications that can help their family member maintain their mental equilibrium. THERE IS HOPE.

Violence and mental illness

It is hard to focus on the facts about mental illness and violence when the news is peppered with horror stories making one think that mental illness and violence go hand- in- hand. Nothing is further from the truth. The incidence of violence committed by someone with a mental illness is the same as the incidence of violence committed by the general population: about one percent of the population. In fact, a person with mental illness is more likely to have an act of violence perpetrated on them. Let’s look at some facts as enumerated in the NAMI Family-to-Family Education Program, 2013.

• People with schizophrenia and mania who take medication regularly and who do not abuse alcohol or other drugs are no more violent that the rest of the population. Most people with schizophrenia are customarily withdrawn, frightened and passive.
• Similar to the general population, people with untreated schizophrenia and mania are more liable to commit a violent act if they are on street drugs (crack, meth, cocaine, speed, PCP-even marijuana) or if they are abusing alcohol. The use of street drugs or alcohol increases the likelihood that the untreated individual may act on the violent thoughts and paranoid delusions they are having. The combination of major mental illness and substance abuse is a significant predictor of aggressive behavior.
• The likelihood of violence is greatest among males in their late teens or early 20’s.
• The best prediction of future behavior is past behavior. There is good reason to be wary of an individual who was aggressive before becoming ill, or of individuals who have previously been violent when they were particularly disturbed. If your relative has never been aggressive in a period of psychosis, it is unlikely that s/he will become so.
• Warning signs of imminent physical violence that inpatient staff in psychiatric facilities are taught to look for are as follows: impulsivity, talking more about violent ideas, a sudden change in eye contact (staring or avoiding looking others in the eye), pacing, becoming visible angry, yelling, tremors, a rigid posture, clenching jaws and fists, pulsing arteries in the temples, verbal abuse, profanity, and hyperactivity.
• Besides our concern about aggression, we all deal with our dread that our family members will do something harmful to themselves. Some people, especially those with more insight into the damage caused by their illness, may become depressed after a psychotic or manic episode. Many families struggle through the active phase of schizophrenia or intense mood episodes only to be stunned by a family member’s suicide attempt when they felt that things were getting better. Even if these critical events don’t happen in our experience, it is important to know about them. If you have an opportunity to spread the truth about violence and mental illness, you can reduce stigma.

Bipolar, a mood disorder

Kay Redfield Jamison, Ph.D., who has a diagnosis of mental illness, includes this personal account in her book, Manic-Depressive Illness, NY: Oxford University Press. The following is an excerpt:

“There is a particular kind of pain, elation, loneliness, and terror involved in this kind of madness. When you’re high it’s tremendous. The ideas and feelings are like shooting stars,  and you follow them until you find better and brighter ones. Shyness goes, the right words and gestures are suddenly there, the power to seduce and captivate others a felt certainty……..But, somewhere, this changes. Everything previously moving with the grain is now against - you are irritable, angry, frightened, uncontrollable, and enmeshed totally in the blackest caves of the mind.

“Credit cards, bounced checks to cover, explanations due at work, apologies to make, intermittent memories of vague men (what did I do?), friendships gone or drained, a ruined marriage.”

The NAMI Family-to-Family Education Program, 2014 lists the following characteristics of a manic episode. The mood is abnormally elevated, expansive, euphoric (high) and/or irritable.  There is decreased need for sleep, insomnia, staying up all night. There could be an increase in goal-directed activity which can include excessive planning of an activity.

Another symptom includes increase in pleasurable activities that risk painful consequences such as excessive spending, sexual recklessness, foolish business investments.

Also there is inflated self-esteem or grandiosity, more talkative than normal or pressure to keep talking, rapid thoughts or “flight of ideas,” distractibility, short attention span, difficulty concentrating. Hypomania can exhibit in the same way but there is not a marked impairment in functioning.

Some 3 million Americans live with some form of Bipolar Disorder.  If your relative is one of these people, there are important things to know.  This mood disorder, formerly called manic-depressive illness, can be profoundly debilitating; the devastating plunge from mania to major depression is terrible to experience. For some, periods of stability do occur between episodes; they and their families are lulled into believing the illness has vanished and will not strike again. However, the time between episodes tends to decrease as the person gets older, creating a life-long challenge of managing the illness, and finding strategies that will sustain periods of stability.

Bipolar I is diagnosed when an individual has had one or more episodes of full-blown mania, usually – but not necessarily accompanied by one or more Major Depressive Episodes. This illness can be a “fooler.” It is not unusual for people to have several depressive episodes (and a diagnosis of Major Depressive Disorder) before a full manic attack occurs. In addition, many people with this illness will be diagnosed with Major Depressive Disorder because they do not recognize (or report) prior episodes of mania. This is why consultation with the family is absolutely essential to insure a proper diagnosis. If the ill family member will not consent for you to speak to the doctor, send the doctor a registered letter with your account of what has been going on.

Lack of sleep is one of the most common triggers of mania. It is a good idea to educate your ill family member about this feature of the illness. If a manic attack is caught early, it is often possible to head off a full-blown episode with proper medication.

Once the manic episode is fully underway, family members will find it very difficult to get their ill relative into treatment. Denial and lack of insight are the norm rather than the exception in this severe part of the illness. It may be necessary to call law enforcement for help in getting your family member to the emergency room. Crises Intervention Training has educated law enforcement to recognize and deal with people in a manic episode. They know your family member needs treatment, not jail.

Schizophrenia, mental illness with psychosis

The following is an excerpt from “Dawn’s Story” published in the Winter 2014, NAMI VOICE:

“Mental illness sneaks up and hits you hard when you least expect it, knocks the wind out of you, beats you to the ground and leaves you wondering what happened.

“In the summer of 2001 my son Matthew graduated high school and was thinking about his future when he was struck by a serious psychotic episode, an almost complete break with reality. In Matthew’s mind, voices and distorted images haunted him. He because convinced that people were after him; shadow people followed him. He talked with the dead who lived under the basement stairs. My beautiful son was disappearing into that dark, terrifying nightmare called schizophrenia, and I was in a panic. My son was so very sick, and I didn’t know how to help him.”

Dawn found a Family-to-Family class where she received education, support, and guidance. Dawn states, “I was able to have an active, positive impact on my son’s care and future. I’ve become the mother my son who is living with schizophrenia needs.”

Schizophrenia is a devastating brain disease whose acute stage always involves a psychotic episode, meaning there is a complete break with reality. It is now evident that schizophrenia involves some fundamental alteration of the brain. A recent article concludes, (quote) “Schizophrenia is a disorder of brain circuitry, not some mysterious demon. Increasing evidence points to abnormalities that arise very early in life, probably before birth, which disrupt the normal development of the brain.”

The general public tends to confuse schizophrenia with “split personality” (which it is not), or with rational thinking that goes in opposite directions (which it is not), or demonizes schizophrenia as psychopathic behavior (which it is not).

Schizophrenia is a common brain disorder which affects 1 out of 100 people, typically striking them down in the prime of their early adult years.

The following are more specific symptoms from the Diagnostic and Statistical Manual (DSM-V), American Psychiatric Association, and Dr. Anand Pandya, MD NAMI.  Two or more of the following symptoms must be present for at least one month: delusions, hallucinations, disorganized speech,  grossly disorganized or catatonic behavior, or negative symptoms such as decreased speech, lack of motivation, flat emotional responses, inappropriate crying, laughing or yelling, inability to relate to others. More significant symptoms include bizarre delusions, auditory hallucinations of hearing a voice providing running commentary or two or more voices talking to each other.

Other symptoms in the early stage include social withdrawal, decline in function, less attention to hygiene, bizarre behaviors, unusual rituals, suspicious, illogical beliefs, odd sensory experiences such as illusions(misinterpretation of a sensation such as seeing a shadow and thinking it is a monster or believing that you are hearing words in the midst of a radio station).

As the disease progresses to the acute phase, they continue exhibiting the early negative symptoms; in addition, they may become more anxious, irritable, agitated.

In the residual phase even with treatment, previous symptoms may continue to exist, but with less intensity.

For a list of books on depression, bipolar disorder, and schizophrenia go to www.namisantaclara.org/books.htm. These books will aid in the patience and understanding needed to cope with the illness. Also search on “hope for schizophrenia” With treatment and education, there is hope for recovery.

Depression, a mental illness

 Depression is often misunderstood. Many people who have never experienced depression think it is “having the blues” are “being down in the dumps.” The further show their lack of understanding by telling the depressed person “snap out of it,” “get a hobby,” “exercise,” “you have nothing to be depressed about,” “cheer up.”

Depression, known as Major Depressive Disorder, is a serious medical disorder. According to nami.org, “It can be caused by psychological, biological, genetic, environmental factors. Its danger is not to be underestimated. It is the leading cause of disability in the United States and other developed countries. If left untreated, it can lead to suicide.”

The good news is it is a highly treatable illness.

A closer look at symptoms reveals these characteristics of mood: sad or very irritable; cannot be cheered up; loss of interest in pleasure in daily activities.

Among physical symptoms are insomnia or sleeping too much; change in appetite or a significant unintentional change in weight; being visibly slowed down or agitated; extreme fatigue and lack of energy; decreased sexual drive, catatonia (psychotic stage).

Behavioral symptoms include decreased motivation; decreased task performance; withdrawal and isolation; loss of gratification in effort; lack of attention to hygiene and appearance; no desire to talk, interact, socialize; grossly disorganized (psychotic stage).

Symptoms associated with thinking include accusatory, self blaming thoughts; feelings of worthlessness or excessive guilt; having very low self-esteem; marked indecisiveness or the inability to think, remember, concentrate; recurrent thoughts of death, suicidal thoughts, suicidal plans; delusions (psychotic stage), disorganized, incoherent speech (psychotic stage).

Symptoms involving the senses are hypersensitive to noise, light, stress;

hallucinations (psychotic stage).

Psychosis is a break with reality in which the person sees, hears, or feels things that are not there. Psychosis can be manifested in bipolar disorder, schizophrenia, as well as depression.

Abraham Lincoln gives a glimpse of the depths of his depression when he said, “I am now the most miserable man living. If what I feel were equally distributed to the whole human family, there would not be one cheerful face on earth. Whether I shall ever be better, I cannot tell. I awfully forbode I shall not. To remain as I am is impossible. I must die or be better, it appears to me.”

Because the physical signs of a major depressive episode can mimic other illnesses of the thyroid and adrenal glands, and illnesses like MS and heart disease are known to cause depression, these physical disorders need to be ruled out. It is absolutely essential for people experiencing depressive symptoms to ask for, and get, a complete physical as part of their diagnostic work-up.

It is important to know there is good treatment for depression. A person should not try to “tough it out.” There is HOPE. Treatment works.