Sometimes I Feel Like Somebody’s Watching Me: Living With Schizoaffective Disorder

Recently on CNN Health, a concerned father of an 18 year old daughter who has been repeatedly hospitalized, and ultimately diagnosed with Schizoaffective disorder, asked, “Will my daughter ever recover her mental health?”

For those of us who suffer from behavioral health maladies, this question is all too familiar. Is this a permanent condition? And, if so, will the symptoms always return? How am I supposed to live like this?

Or even: I can’t live like this.

Only you can.

schizoaffective disorder

"I wonder if any of them can tell from just looking at me that all I am is the sum total of my pain, a raw woundedness so extreme that it might be terminal. It might be terminal velocity, the speed of the sound of a girl falling down to a place from where she can’t be retrieved. What if I am stuck down here for good?"—Elizabeth Wurtzel; Prozac Nation

Dr. Charles Ralson, a psychiatrist a Emory University Medical School, chimed in to answer the distraught father’s question, providing a thorough and thoughtful answer, even if it is not exactly what one wants to hear.

“The most truthful answer to the question of whether your daughter will ever be functional is maybe,” he said.

A seldom talked of illness, many have no idea what Schizoaffective disorder actually is, let alone how it adversely impacts one’s life. According to the Mayo Clinic, Schizoaffective disorder is classified as “a condition in which a person experiences a combination of schizophrenia symptoms—such as hallucinations or delusions—and of mood disorder symptoms, such as mania or depression.” In essence, Schizoaffective disorder was created to explain a condition that includes symptoms halfway between schizophrenia and bipolar disorder, with more chronic psychotic breaks than the vast majority of individuals with bipolar disorder or psychotic depression. Additionally, suffers experience more depressive and manic symptoms than people afflicted with schizophrenia do. Respectively, this illness is admittedly not well understood even by medical professionals, as it is essentially a mixture of myriad mental health conditions that are highly unique depending on the affected person. Still, there are hallmark traits of Schizoaffective disorder, which allows for a proper diagnosis to be made.

People suffering from this illness are prone to having strange or unusual thoughts or perceptions; frighteningly paranoid thoughts and ideas; delusions; aural hallucinations; disorganized thinking; bouts of depression; manic moods or sudden increases in energy and behaviors that are out of character; irritability and poor temper control; suicidal or homicidal thoughts; hard to follow speech patterns; behaviors at extreme ends of the “normal” spectrum, such as hyperactivity or catatonia; problems with memory and attention span; and some class of parasomnia.

Dr. Ralson explains that, generally, psychotic disorders such as this one typically follow what is sometimes known as “the law of thirds.” This simply means that one-third of patients will recover; one-third will become exponentially more stable, but will not return to normality; and one-third will, sadly, experience a continual downward and progressive trajectory of their illness.

While it is impossible to know which “third” a person with Schizoaffective disorder will ultimately fall into, general trends exist that enable psychiatrists to predict positive or negative outcomes. For example, bad outcomes typically entail an early onset of the disease; a gradual rather than abrupt onset of symptoms; and psychological troubles (i.e., paranoia or odd behaviors) prior to the first full blown episode; and also be being male. Good outcomes are predicted when there is a later onset; a sudden onset of psychosis; high-level functioning prior to becoming ill; and being female. In this particular case raised on CNN, the fact that the man’s daughter also suffers from obsessive compulsive disorder does not auger well for a positive outcome, as it is deeply common for individuals who develop psychosis to also be afflicted with OCD, either before having a psychotic break or simultaneously; multiple hospitalizations at such a young age; and, thus far, exhibiting treatment resistance.

Dr. Ralson explains, “We now know that most of the damage to the brain caused by psychotic conditions such as schizoaffective disorder happens in the first years of the illness. This is also when treatment seems to have the most powerful—and beneficial—long-term effects.People who take medications and whose symptoms go away appear to do much better over the long run than people who either don’t stay on medication or who don’t respond.” Essentially, winding up in the most positive third is a ticking clock when it comes to the quantity of time one spends in psychosis.

Naturally, the law of thirds is not a hard and fast rule, and is resisted by many mental health professionals. But one thing is for certain: Schizoaffective disorder is a painful illness, just like any other behavioral health ailment, and treatment is imperative. And so is hope.

Treatments vary greatly for Schizoaffective disorder, just like they do for, say, Major Depression. In addition to psychotherapy, it is critical the affected individual works with a psychiatrist to find the correct medication cocktail. Since this disorder consists of both a thought disorder and a mood disorder, it comes with its particular challenges. For example, while the person with Schizoaffective disorder ay be acutely depressed and suicidal, he or she may also be reticent to take the prescribed medication because of irrational fears and intense paranoia, which are often the most pronounced symptoms of the illness. For the most part, long-term stabilization rather than recovery is often the goal of treatment; as is insuring the sufferer has a stable support network in order to bolster the likelihood of medical compliance. Respectively, people with Schizoaffective disorder often experience multiple hospitalizations due to the prevalence of acute psychosis, and the propensity to become dangerously depressed and decompensate quite rapidly, especially with the presence of some type of critical life stressor. This is immensely critical. In addition to making sure the individual is in a safe atmosphere, their medication can be quickly adjusted to stabilize the person via antipsychotic medications.

According to Phillip W. Long MD, “Evidence to date suggests that all of the antipsychotic drugs (except clozapine) are similarly effective in treating psychoses, with the differences being in milligram potency and side effects. Clozapine (Clozaril) has been proven to be more effective than all other antipsychotic drugs.” If the initial antipsychotic drug choice does not show results with two to four weeks, another medication must be tried immediately, as it is vital to stabilize the patient as rapidly as possible. Newer antipsychotic medications often used include Risperdal (Risperidone), Zyprexa (Olanzapine), Seroquel (Quetiapine), Geodon (Ziprasidone), and Abilify (Aripiprazole); and are often supplemented with an antidepressant, such as Trazodone or Prozac (Fluoxetine). Lithium, Depakote (Valproic acid), or Carbamazepine may also be used to manage mania and stabilize mood.

As medical science continues to advance, there is much reason to hope that newer treatments will aid those not on with Schizoaffective disorder, but behavioral illnesses across the board. We have to believe—for positive thinking is not a sham, but essential on the path toward stabilization, if not recovery. As Robert Peary, allegedly the first person to reach the North Pole once wrote, “I will find a way out or make one.”