What My Personal Experience With Schizoaffective Disorder and Anxiety Was/Is Like
Well, this one is a tall order, and I have much to say on the topic. There have been many things in my life that were indications of deeper problems that I didn’t understand or wasn’t aware of. I had a mental illness of one sort or another from a very young age.
Sometimes it is useful to relate anecdotes from my younger days. I have a recollection of a time when my mom was in the psychiatric ward. Back then, when I was around 9 or 10, it was very common for someone to have to be in the psychiatric ward for as much as six months, even for something relatively simple (so one might think) as trying a new antidepressant. It was tough getting through these times. We had to prioritize my mom’s illness above our own needs. I refer to myself, my brother and sister, and our father.
The first thing I recall happening at this time was being too young to know how to use the washer and dryer and never having clean clothes. At one point, I think I lost count of how many days I had to go without taking a bath. It had to be over a week, and every night I would put my socks, shirt and track pants in the dirty clothes hamper, then the next morning I would fish them all out and wear them again. I don’t know if this was the time when I developed bad foot odour, but I do know that I had worn the same pair of socks for so long that the sweat would evaporate and the socks would turn to a solid shell that I had to wear to school.
At one time, at this point in my life, I had to do something in front of the rest of my class, and I was not only terribly shy, there is no way around saying it: I stunk. The levels of fear, anxiety and shame knew no bounds. My classmates would make remarks behind my back, no one wanted to befriend me, and the idea that I could even have a female friend seemed totally out of the question.
I mention this because it wasn’t until late in my adolescence that I would actually admit to liking girls. And even then, I had a hard time approaching them. Looking back, I recall thinking that if I didn’t start showing my hidden interest in girls at a young age, not only the people at school, but my dad would start to think I was gay.
The other times I recall when we went to visit my mom in the hospital every night, it took a lot out of the family. We had little time after school, and I am sure we would have all wanted to read in that time or watch Star Trek, or even develop friendships or take part in after-school activities. Instead, we would have an early supper, then take a long drive into Edmonton and sit with my mom, who was often not very communicative.
I can’t imagine what she must have gone through. She had unipolar depression and was not only medicated for that, but often her doctor would sign her up for ECT, which at the time was very barbaric in my opinion. The situation has changed greatly, and ECT has long been known to be one of the most effective and rapid therapies that can really help people with serious mental health concerns, but she would experience severe memory loss, and years of her life were spent hospitalized. As a note, I think overall I spent about 2.5 years in inpatient psychiatric care in my life.
Then came the most devastating part of everything. One day on the way back home from a visit, my dad was saying a bunch of negative things about my mom and I asked him:
“But Dad, don’t you love Mom?”
“No.”
That was all he said, and with that one word I had to do ten years of growing up, after bursting into tears and seeking the only consolation I had: the caring arms of my sister.
That was when I was 10. I was going through my own battles with depression. The funny thing was that I was a very smart and resilient kid, and I not only did very well in school, I did a great deal of reading and loved to play chess with my dad and listen to classical music records. It wasn’t until four years later that I first went into treatment (against my will) for my illness.
It was one of my worst hospital stays. The place was well furnished, clean and spacious, but in that short two weeks I kind of came to the (true or otherwise) realization that everyone around me thought I was crazy. All my young life I had dreamed of being a lawyer, and then more recently, thanks to having a wonderful time in the Air Cadets, I wanted to join the military in one capacity or another. After just 14 days in treatment, I no longer cared about family or reputation or school. I let my life slip past me and didn’t even stay on the medications I was given.
Sometimes I wonder if I had been more receptive to help, I could have avoided the later disasters that didn’t hit me until just a few very short months after I turned 18, which is the age of majority in Canada. But the truth was, the treatment I would have received would have been far below the standards of the treatments that would eventually actually heal me. Those medications and treatments were still 20 years away, for me and likely at least 15 years away for medical science.
As many do, I stopped medications after leaving the hospital, and I don’t totally regret it because the pills were worse than being stoned, and I wasn’t the type of teenager to want to change my moods by legal or illegal means at all. I really believed that mental illness and medications were fallacies for the weak-minded.
One of the scariest images I have of being in the hospital at 14 was talking to an overweight, grey-haired man with a thick beard. Halfway through a short conversation, he let out a long string of drool and I was dumbstruck. Was this the sort of person I was going to end up being like? No family, no job, few years left to accomplish anything other than going in and out of psychiatric wards. Much of this was my own stigmatizing theories and projections, but it terrified me.
I tried to tell my dad about it, and I think he had the impression that I was somehow judging people who were disadvantaged. Drooling didn’t make this guy a bad person, and it certainly didn’t mean I would have to end up in his situation.
I want to try and give my readers a snapshot of my depression and anxiety. One of the best ways I recall to describe what my school days were like would be to refer to a likely little-known movie called “3 O’Clock High,” where a young man challenges a much larger and scary-looking bully to a fight after school. In the movie, a lot of tension was built up as each second ticked by, and the person who was going to fight the bully found himself becoming the object of the attention of many.
The way the clock slowed, the way all the fear built up, was a pretty realistic way of describing how I would often feel, especially for one of my many school fights. By the time I got to high school, I hated schoolyard fights, and they would cause me so much anxiety and guilt. I did fight a lot, but mostly training or play fighting with friends or fellow cadets.
Then one day a guy challenged me to a fight, and hundreds of students turned up to watch, but I was on the other side of the school boarding my bus home. That night I looked up the school counsellor’s number and called him and explained how much I hated fighting and how the guy who picked the fight with me was half my size.
The next day we were called to the office and two things happened. One was that our grade coordinator told us that if we couldn’t work things out, he would have us put on boxing gloves and fight, which I really think was one of the cruelest things I have ever heard a teacher say. Then they went through a dispute-resolution process, and we never bothered each other again. I told no one, not even my parents, but I think a few of the administrators must have known I called my counsellor and respected me for it.
The problem came in just three and a half years later when I had a mental breakdown, got into a bad fight where I badly hurt the other person, and then was seen by all my schoolmates being arrested. I resisted the arrest by pushing and wrestling with the cops until they put me in handcuffs. My shame at the things I did while not being in my right mind was massive.
So I should let my school days go with that.
First, I should talk about anxiety. This is something where, at least in my case, many situations, from public speaking to unexpected noises, threats of violence, or even just talking to someone I had some fear of for whatever reason, would shoot my adrenaline levels way up, leaving me weak and shaking and simply wanting to end the negative stimulus.
Gambling in just about any of its forms, from slot machines to scratch tickets, playing poker or gambling on 8-ball would do this, usually just as I was about to lose money. This adrenaline is actually something that some people have too much of, and sometimes it can also be an addictive thing. Some people take drugs that shoot up their adrenaline levels; I simply have too much of it.
The way it looked when I was addicted to gambling was that I would spend my money on playing Video Lottery Terminals, basically a slot machine with different games on it, lose everything, then I would go home and feel so depressed and restless that I desperately craved another dose of adrenaline. Where I hit my rock bottom was when a young woman from downstairs in my building loaned me a few VHS movies and I pawned them—for much less than they were worth—just to gamble.
This addiction made other things worse—my depression, my manic states (which were also conditions where I would seek out ways to lift my mood, even temporarily), by using alcohol or meeting women my age on telephone dating platforms. My life kept falling apart and getting worse.
Then one day my dad came to see me, and my hair was unwashed, I was hunched over my desk and I was smoking. My depressive state was so severe he immediately told me he was taking me to the hospital.
One of the funny things is that often people with a mental illness will initially have to go into the hospital against their will, get put on medications, then when they get better, stop taking them. After this cycle goes by a few times, the person begins to miss the hospital.
This is where I have sort of a problem with how the system works. Many people with mental health difficulties are trying to get onto a disability pension in Canada. Once you get this, you receive permanent financial and medical expense support. You don’t need to work and you don’t need to pursue self-development.
In many cases this is justified because a person may be a paraplegic or have a mental illness so severe and treatment-resistant that even going outside is too much for them.
I have been on Assured Income for the Severely Handicapped for some years now along with Canada Pension Plan Disability. I have gone ahead and educated myself and worked towards having my current job with the Schizophrenia Society. But if I had told my psychiatrist my goals were education and eventual employment, I would have never gotten disability benefits, even though my job is only part-time and minimum wage.
I have seen others get their pensions and give up on themselves. This leads to job/school loss/withdrawal, and then it leads to losing friends, which leads to isolation, and isolation is one of the biggest killers of people with schizophrenia. One in ten people with schizophrenia will take their own lives, largely because of isolation.
Thankfully, with advancements in teaching, and even in many of the programs put on by the Schizophrenia Society and many other organizations, stigma is beginning to lessen, and more people are seeking treatment. But I just wish there was a way for people with severe mental illnesses to heal more and seek out a full recovery where they aren’t wasting all their time in front of a TV and never going out. To me, accepting that much of a loss of quality of life just wouldn’t be worth it.
So there it is, folks.
Something I didn’t likely mention was how frugal a person needs to be, even when they have a part-time job as I do. I make sure I buy healthy, non-processed foods with little to no sugar or carbs (due to my diabetes), and I am always looking for ways to not just make a buck, but to save a buck.
Some may feel I am a broken record about the following, but not all of you will have heard of them. There are some books that can really help with saving and investing, the first of them being “The Richest Man in Babylon,” which is a short read of around 120 pages, and it teaches, with simple parables, a number of excellent ways to pay off debt, invest, and seek advice and solid investments. There are many books, but that one will be an excellent start.
It was very hard for me for a long time because at one point in my recovery I didn’t feel I was able to do any kind of job. I was on a lot of medications and sometimes couldn’t even read. I was in such a severe state of depression I would try just about anything to get out of it, but there were few solutions.
There was a day I recall laying on my kitchen floor, touching the electrical wires on the back of my stove, wondering if I could give myself ECT.
Another time I worked at a Safeway briefly and had some money, which I took to the bar and got very sick and very drunk and had a horrible time for days recovering—while broke.
Then came the worst of them all, when I had realized a young woman I had been friends with had never seen me in any kind of romantic way and actually thought I was a psychopath. A few weeks of extremely bad depression later, I made a very serious attempt to take my own life.
The truth is, mental illness can do horrible things to a person. But my suggestion is to treat it as a physical health problem, even if one of your problems doesn’t seem physical, like gambling addiction.
Find a general practitioner and get them to help you in any way they can. While going through them for a referral to a psychiatrist can take a very long time, if you simply show up in emergency with severe enough symptoms, you will see someone that day.
Listen to your GP. Listen to your psychiatrists. Make allies with your parents and learn all you can about your illness and ways to support your recovery (or your loved ones—I am sure caregivers sometimes read this too).
Keep a journal. Write in it all the medications you take and write in it about how they make you feel, side effects, changes in mood. Make yourself a detailed study subject of yourself, and share this information with your psychiatrist.
Get a therapist. Make the sacrifice of the cost of it; it will be worth it.
Never stop learning, never stop honestly seeking help, and never give up hope.
Thank you for reading this far.