Manila (CNN Philippines Life) — RJ* looks just like any other young, button down-clad professional who just clocked out of work. He has been diagnosed with schizophrenia since 2016, but has lived with the effects for much longer.

“There were some things in my past that I remember, that turned out not to have been real, so it took a while to figure out what reality is,” he says. “I would have sensory experiences that weren't brought about by any stimuli. I would hear voices and people talking to me. I would see people, but they weren't actually there. No one could corroborate my sensory experiences.”

According to the latest report from Johnson & Johnson's Philippine Health Information System on mental health conditions (PHIS-MH) with data gathered from 10 government hospitals and four private hospitals, schizophrenia is the top brain disorder in the Philippines, affecting at least 42 percent of patients who seek psychological consult.

In the Philippines, there has recently been an increased awareness about mental health issues: from national mental health legislation to universities addressing mental health concerns, there has been an upsurge of structural changes, mental health-related projects, and educational campaigns for the movement. Much of the focus goes to depression and anxiety as two of the most prevalent mental health disorders, but schizophrenia is not given as much attention.

Defining schizophrenia

Schizophrenia is a chronic mental disorder that usually starts between the ages of 16 to 30. Its symptoms make it one of the more severe and debilitating disorders: they are classified as positive (psychotic behaviors not generally seen in healthy people, e.g. hallucinations, delusions, bodily agitation), negative (disruptions to normal emotions and behaviors, e.g. reduced facial expressions, emotions, speaking), and cognitive (problems with memory, attention and executive function).

There are five different subtypes of schizophrenia, namely catatonic (rigidity, peculiar postures, speechlessness), paranoid (delusions and hallucinations that follow a theme), disorganized (disorganized speech and behavior, flattened affect), undifferentiated (symptomatic, but not prominent enough to be classified into the aforementioned) and residual (positive symptoms have disappeared enough to allow normal functioning, but negative symptoms remain).

RJ was diagnosed under the undifferentiated subtype, as he exhibits, in his own words, “a sprinkling of different symptoms.” He may not have full-blown paranoid delusions nor a completely catatonic effect, but that does not mean that his condition is to be taken lightly. He recalls one incident where he experienced a psychotic break. “The hallucination involved my eyes blacking out. I saw completely different colors, and I also had tactile sensations,” he says. “I remember picking something up, and when I jammed it into my throat, I could feel the blood. All my senses were engaged. I could hear everything that was going on completely in sync but then after 10 minutes it all just melted away.”

Schizophrenia as a family matter

Because of the severe nature of schizophrenia, it can affect one’s everyday life, from career to relationships. Untreated and unchecked schizophrenia may take an especially massive toll on sufferers’ family members, who also tend to be their primary caregivers in our family-oriented society.

Madel’s father was a sufferer of schizophrenia. “My father was abusive and experienced violent episodes almost daily. His family distanced from him because of this.” What further reinforced their decision to distance themselves was the misconception that his schizophrenia was a character flaw, rather than an illness. “Immediate community and family members believed that symptoms of schizophrenia were more a manifestation of the person's personality being violent, inconsiderate, and selfish.”

Rose* shares that her older sister used to be an honor student, writer, and psychology major until her schizophrenia manifested through hallucinations, disorganized speech, and the inability to function normally. “We didn’t want to bring her to an institution because of all the rape stories.

There was a time when she’d live in her room and we’d just hand her food like a prisoner,” she recalls. “Taking her out in public was impossible because she’d [have an episode] every time. We were afraid that she’d throw herself out the car, or run away completely naked on the streets.”

It gave Rose anxiety to see her sister in this state. “I didn’t know what schizophrenia was. I just knew that the sister I knew and looked up to was gone and was replaced by this completely different, dysfunctional person who can’t put her life back together, let alone a coherent sentence.”

Sally Bongalonta, Officer-In-Charge at the Philippine Mental Health Association and Board Member of the Alliance of Filipino Families for Mental Health (AFFMH), got into her advocacies because of her experiences with her siblings with mental health needs, one of whom has schizophrenia.

Her mother brought her sister to a faith healer once she started exhibiting symptoms as a teenager. “Akala nila na albularyo lang ang kailangan ... kasi naghintay pa kami ng one year before finally, dinala siya sa doctor. By then, talagang malala na ang symptoms niya.”

Need for a support system

RJ points out that he is the only schizophrenia sufferer he knows. “I acknowledge that there are other people out there who are like me, but who have a harder time functioning. I feel for them, I want to be there for them, but I don't know who they are and where they are.”

He explains further that because schizophrenia tends to be neglected, there is little opportunity to come across somebody else with the condition: “We are not represented in any media. There are no groups for us, as most groups only cater to mood disorders.”

While there may not yet be a schizophrenia-specific group in the Philippines, Bongalonta has worked hard to make family and community support systems work for those with mental health needs. She was also the pioneer of a center within the National Center for Mental Health where patients, including those with schizophrenia, were given psychoeducation and occupational therapy alongside basic life skills training. It is now closed, but it was through this center, as well as her experiences with her siblings, that she saw the importance of social support systems. For example, the patients would work together to plant and sell their own crops. “When the patients see their worth, they will desire to help themselves,” she shares.

Another one of her community support groups, focused on family support like AFFMH, is the Bukas Puso at Isip Family Support Group. It is composed of families of patients from Philippine General Hospital’s Department of Psychiatry and Behavioral Medicine. They hold monthly meetings, where families are able to provide each other with support as they go through similar experiences together.

Bongalonta reflects, “Before, when I was not yet educated about the illness, akala ko na hindi naman importante ang mga family programs, better off na lang siyang naka-confine. I believed those myths as truths … But now, once their symptoms are addressed, I believe they should be given these kinds of social support and intervention.”

Medication is necessary

Apart from social support and visibility, an actual treatment plan from a mental health professional is crucial. This includes psychotropic medications, which are especially important for a debilitating disorder such as schizophrenia. Psychiatrist Melissa Paulita Mariano, MD, DSBPP, says, “While I do not minimize the roles of psychosocial factors in schizophrenia’s development and the importance of psychosocial support for the holistic treatment of schizophrenia, I do not think that a comprehensive treatment would be possible without medications at this point in time.”

RJ is currently at a level where he can function at his full-time job, but he too had a trial-and-error period with medications, transitioning in and out of antipsychotics to see which ones worked for his case.

The price of medications was another point of concern for him. “I am currently at a good place, but back when I was unemployed and I didn’t have my PWD card, meds were very expensive for me. My meds are now ₱200 per pill, which is much cheaper compared to before.”

Rose also raised concerns about her sister’s medication. “Medicine would lose its effect over time, so we’d keep changing it. We’re not rich, so it also took a toll on our family.”

Dr. Mariano echoes these sentiment of financial constraints and psychotropic medication: “[It is] an all too common problem in the Philippines, since this usually impedes patients from procuring the ideal medications for their illness. This would then affect their quality of life and general functioning.”

Fighting the schizophrenia stigma

Referring to the stigma, Rose comments, “I don’t think that Filipinos are even aware of what schizophrenia even looks like. They may see them as crazy people, even criminals. They don’t care for them. Sabihin pa nila na salot sila sa lipunan.”

Family history and environment may serve as risk factors, but its actual cause remains a mystery. This is not helped by the plethora of myths and misinformation about the disorder; people with schizophrenia are neither dangerous nor violent, especially once they have sought a treatment plan that works for them.

Dr. Mariano assures, “With appropriate treatment, a person with schizophrenia can function as well as any other person in society.” Bongalonta adds, “Support groups and experts alike should help each other, hindi magiging successful ang mga mental health intervention kung wala ang cooperation ng lahat.”

Madel underscores the need for empathy when it comes to schizophrenia. “They need to be understood with compassion. It is a long process that doesn't have to undermine the individual's capacities.”

Although RJ is successful at staying functional and holding down his career, he notices a marked change in some of the people he confides in about his disorder. They treat him differently — walking on eggshells, treating him too sensitively, and implying that he is unreliable, although all that has changed is the knowledge that he happens to have schizophrenia.

His request can be a lesson in empathy for anyone, with or without a mental illness. “Please treat us like human beings. We’re not helpless, but when we do ask for help, do not leave us alone. Despite all these differences, we’re still human.”

***

*Name changed at the interviewee’s request.

The PHIS-MH database is currently stored in participating hospitals and medical offices and is yet to be incorporated into the DOH system.