Struggling with schizophrenia: An activist’s story

February 10, 2021

An advocate battles for mental health – while battling for social justice.

I am an activist and a mental health patient. This is my story.

I came from a petty-bourgeois background. I was provided with the essentials, as well as some luxuries a petty-bourgeois family could afford at the time: private school, cable TV, a computer with internet connection.

I was sheltered but, I’d like to think, not pampered. I got acquainted early on with inequality; I noticed that females and males were treated differently, with the former doing more of the housework and given more restrictions on movement. I was always reminded to be meek and modest and to learn to do housework because otherwise, my future husband will beat me up, according to an elder. I knew even then that the world is violent, and that if I were to survive, I had to toughen up.

I turned to school to escape my chaotic childhood. I loved learning, but I didn’t like how standardized tests only measured certain types of intelligence. I found it strange that someone can be so creative, yet not be considered as intelligent because he or she was not numerically-inclined.

But school provided me with ways to see the world beyond its proverbial four walls. I went to a liberal Catholic school for young women. In protests during the latter part of the Estrada administration, our school had its own contingent composed of students, faculty, and staff. We were chauffeured to and from the rally site. I barely remember my first rally, except for a thought during the march from Liwasang Bonifacio. I knew I didn’t know a lot of people in that crowd, but I knew that they were good people. Marching with a crowd of strangers to an unfamiliar destination, I finally if oddly felt I was home.

It was a matter of course that I would seek activism in college. Coming from an oppressive environment, it felt liberating to study society by engaging in various forms of concrete action.

I have been a full-time activist for two years when I was diagnosed with schizophrenia. I was 24. I also have depression.

A few years prior, I began exhibiting suicidal ideation and other symptoms. I was employed in a media organization back then, doing administrative work and other tasks asked of me. I think I pressured myself to do well, being a new graduate.

The pressure, however, started to get to me. I remember staying late at the office just to finish the tasks. I never ran out of tasks to do. I started to fantasize about dying, just so I can stop living with mostly internal pressure. I also fantasized cutting open my wrists, and letting my blood rush forth, a sort-of exchange for time so I can complete the tasks.

It was also during this time that a co-worker, a former activist, was harassing me. He was condescending towards me. He would also touch my bare skin whenever we were alone. At first, I thought I was just sensitive, as I generally don’t like being touched, and that I was thinking over it too much. I took his actions seriously, as I was a new activist, and I looked up to old-timers.

So I told my supervisor then. She believed me, and she set up a meeting with my co-worker. I cried so much during that meeting. I have no recollection of my co-worker admitting to and asking an apology for his actions. What he did, though, was say that I should toughen up. I don’t think I got counseled for that. I didn’t think it affected me, anyway.

Fast forward to two years later. I was a full-time activist by this time. I think this was the year when I started getting bothered by the voices I kept hearing. They were so loud, usually as if someone was shouting at me. And they weren’t saying benign things. It was usually insults meant to degrade my being. Stuff like, ‘Wala ka namang kwenta eh. Bakit hindi ka pa mamatay?’ or ‘Tanga ka eh!’ over and over. Sometimes, they had my mom’s voice, and they repeated hurtful stuff she said to me throughout the years.

These voices kept me up at night. I started to devise ways just so I can get some sleep and be able to do my activist tasks the next day. I would listen to music with lyrics, cry, cut myself, take sleeping aid. There would still be days, however, that I would wake up late, or unable to get up from the bed, crushed by debilitating self-doubt.

Despite this, I was still accomplishing my tasks. I was still able to write, albeit with much less focus (because of the voices). I was sometimes late to meetings, but I just usually said I wasn’t feeling well. My colleagues didn’t press the issue, even if apart from these incidents, I was usually on time. I didn’t want them to worry. Being in a national organization, we had so much on our plates. I didn’t want to add to their burden.

There was a breaking point, when I said to myself that I cannot continue living like this. That either I end my life or get help. So I asked my partner for help in explaining my situation to my colleagues. I also wrote them a letter. Even before then, I knew that I had trouble explaining what I was going through verbally. I was a better writer than a speaker.

They arranged for a counselor to see me. I opened up about my struggles. She suggested squeezing harder things than a stress ball. She also asked me if I wanted to try talk therapy (see a psychologist) or medication (psychiatrist). Because at the time, I was averse to the thought of taking medication, I said I wanted to try talk therapy first. So she referred me to a psychologist.

My partner accompanied me to the psychologist’s clinic. It was a nice clinic, with a garden and fountain, but I didn’t return after my first session because I didn’t like it. In the session, she asked me to pretend I was reliving what I had gone through. I didn’t like this. I was also unsure whether to trust that psychologist. Also, I didn’t think we coulf afford the consultations. So I didn’t return.

I remember a time when I wanted to cut myself to die. Before that, I only cut myself to feel better or to punish myself. This time, I cut myself furiously. I got triggered due to a small misunderstanding with a friend. The blade became blunt, however. So obviously, I lived. I quipped then that even in killing myself, I was a failure. I was even able to go to a meeting after.

My fellow activists then eventually referred me to a psychiatrist. My initial diagnosis was major depressive disorder, and I was made to drink medicines that would control my moods and another for the other symptoms. The voices persisted, however. My doctor and I then figured out that the voices caused my depression, not the other way around. So he adjusted my meds.

Recently, my psychiatrist recommended that we reduce my medicine’s dosage. My doctor also recommended a sleeping aid, as needed. I usually forget that I have this medicine. I also tend to not take it when I have to do something in the morning, as I usually oversleep and wake up groggy when I take this the night before. I am also taking supplements recommended by my psychiatrist.

Because of these meds, I do not drink alcohol, as it may undermine the effectivity of the meds. Before taking new meds, I research first about any interaction that it may have with my maintenance meds, and I have apps for this. I also tell the doctor that I am taking these meds, so that the doctor may prescribe alternate ones.

My psychiatrist does not only treat me using drugs, though. He introduced me to mindfulness and cognitive behavioral therapy, mainly through books and worksheets. He also helps me think through the muddled mess created by wayward chemicals in my brain.

Having schizophrenia did not dampen my will to contribute to the movement. But there was (or is) always a period of adjustment, which I think goes with the condition.

In the past, I was asked to perform other tasks, because my doctor saw that I was really struggling with those that were assigned to me when I was newly-diagnosed. Some of my other tasks included talking to other people. My workmates then made it a point to talk to my doctor about what was going on, and how they can help. After talking with my doctor, I was asked point-blank if I was having difficulty with the given tasks. After the talk, I was shifted to other less-demanding work. This included doing tasks with less human contact that were repetitive in nature, as suggested by the doctor.

I had been a part of this organization for four years when I was diagnosed. By then, I had been a full-time activist for two years. I was the first to be diagnosed in that circle, as is always the case in the groups I would later join. So of course there were growing pains. One of the issues that came up was how to pay for my meds. My medicine back then cost around US$5 a day and that was just for the primary one. So we had to think of some way that will enable me to continue to be medicated. My psychiatrist also enrolled me in a program that gave me free meds for more than a year. There was always someone to accompany me to the clinic, which eventually became a monthly schedule. It was usually my partner or someone from that group. This was the set-up for two years, before I joined a different organization.

I’m not sure, but I don’t think I was ‘babied’. Yes, I was shifted to less demanding work, but that was after a year (or so) into being newly-diagnosed. I don’t think I was shielded from the decisions some of my colleagues made. In fact, some of them thought that overburdening me with tasks can be a good thing, as it may distract me from my condition, as if I was merely heartbroken. I wasn’t allowed to resign from my position, even when I was thinking of doing it because I was tired of being a burden. I was still asked to do some tasks that were expected of those who occupied my position. But my workmates provided support and feedback, and I knew that they only had my best interest at heart. After all, my colleagues, and my partner, were my first support system. It helped that I eventually lived in the staff house, and experienced communal living.

I intentionally did not prioritize telling my siblings and parents about my condition, because I know that I will never hear the end of it. I know Mother will blame activism for my condition. I didn’t need nor want unnecessary stress, especially based on baseless accusations. I think this was a wise decision.

I still struggled. Not being able to do the tasks originally assigned to me was disheartening, but I was lucky that my fellow activists were very supportive and did not push me beyond my capacity. They responded to my tasks that needed to be done, while they monitored my condition. I knew even then that communities are integral in the recovery of a person with mental health problem (MHP).

When I transferred to a different organization, I was given the task of bookkeeping. I think it stressed me out, but empowered me at the same time because it was new to me. Also, it was something I could do that did not entail interacting with many people. Eventually, the stress of thinking over the indirect issues surrounding the work stressed me out. I cannot let go of the work, however, because we cannot find a replacement who will be able to do the work without getting stressed out even more. Also, I had the notion then that maybe, that is all I can offer to the movement.

This group eventually had other persons with MHPs. There were some issues. Belatedly, I thought this came from the notion that because the group was able to handle a person with MHP well, the group will be able to handle other people with MHPs just as well, with less special attention to the different conditions, status of treatment, or even personalities of these people.

If the previous group helped me get out of the black hole, this one helped me get my bearings. They had enough confidence in me to give me a task I was unsure of, and which I accepted because it is a task that needs to be done. I eventually thought of it this way: Yes, it’s drudgery, but accomplishing it frees other people to do more important tasks. I learned again that there is no task too small. I eventually found that the task provided a challenge to me, while maintaining less contact with other people, which is one of my triggers.

I discovered that dealing with people generally stresses me out. I find people confusing. I think this is compounded by my difficulty in understanding whether people really mean what they say. I developed the technique of just paying attention to what is literally being said, because in the past, I had difficulty understanding what is being said because I tend to assume what the person is feeling, etc. So I trained myself to just listen to what is literally said. I am also very conscious of how I present myself to people. I was told that I had a flat affect (monotone, expressionless face), which is a symptom of my MHP. This compounds my awkwardness in interacting with groups of people.

Seven years since my diagnosis, and five years in that organization, I moved to another place. This made coordination with my psych difficult. There were times when my colleagues tried to accompany me to the psych, but schedules did not match. The recommendation my psych made also never made it here. So my colleagues , having never known me before moving here, made do with my informal sharing of my experiences living with schizophrenia.

Here, much of my anxiety living in a harsh city as a female with a non-traditional appearance melted, at least somewhat. I blended in, and now feel safe enough to go home at night. My present set of tasks also helped. I felt that I could actually contribute something aside from doing work that brought me anxiety.

Since the people I regularly talk to here comprise of individuals from different backgrounds and generations, stories they may have told each other millions of times seemed new to me. I appreciated this. It provided me ways of interacting with people, and a guide in what to do in certain situations.

The people here are generally very helpful, but it took me sometime to break away from my pattern of not asking for help even when I need it most. And since there are families here, it comforts me to see parenting styles different from how I was brought up. They also continue to encourage me to accomplish tasks I would not have done back then due to negative feedback such as teaching and writing in Filipino.

Generally, I didn’t expect to be where I am now. A little over a decade ago, I was vividly hallucinating, with the voices keeping up a running commentary every day of my life, and suicidal ideation, a daily habit. Even on meds, I still had issues. It still seemed as if I was walking through Jell-O; I was lagging. It took so much effort to read and write because my mind had nothing in it. I always forgot details. I was always careful to hide my paranoia and delusions.

These days, I sometimes feel I am not intimately acquainted with the harsh, jumbled reality of schizophrenia, until a tiny incident happens, then I am reminded again why I continue to take meds. But this did not happen overnight. It was a confluence of factors: meds, coordination with my psychiatrist, supportive communities, appropriate tasks, access to meds and information, activities I filled my time to avoid overthinking (ranging from physical activities to creative pursuits). Maintaining links with colleagues who are also persons with MHPs also helped me with the process of distinguishing symptoms, and it was always helpful to know coping strategies and resources they used or knew about. In this way, I knew about apps I could use, books I could probably relate to, activities that could help me. These make up my bag of tricks, which may contain different things to other MHPs. Two people can share the same diagnosis but experience it differently (different symptoms, different environment, different personalities), so in this sense, the approach to handling MHPs cannot and should not be a “one size fits all” thing.

It can really get tiring at times: the endless cycle of good, bad, and blah days. I may not always be able to explain myself to the people around me, and in turn, they may not always understand. And in a world being destroyed by imperialism and all reactionaries, sometimes good days are few and far between. But I keep going, because I know that not everyone is as privileged to have access to resources as I do. And this urges me on to fight for a world where everyone can get the help that they need. Because the accessibility of basic social services such as mental health care is a right.

But there are still days that nothing works. Then I stay in bed. But eventually, I get up, because I know that fellow activists, the masses, are counting on me to deliver the needed tasks. I carry on, because while death can stop for me, history stops for no one.

Featured image designed by Freepik
Mai Victoria Castro