Living Upside Down

According to Mind.org.uk, Schizoaffective Disorder is defined as "a condition where symptoms of both psychotic and mood disorders are present together during one episode (or within a two week period of each other)."

The word schizoaffective has two parts: 'schizo–' refers to psychotic symptoms. '–affective' refers to mood symptoms.

Now, when you read the word psychotic, no doubt you probably honed in on the "psycho" part, in particular, and that probably flooded your mind with images of the knife-wielding Norman Bates from "Psycho", or even Christian Bale's sinister smile as he gleefully drops a chainsaw on an innocent escort fleeing from his apartment in "American Psycho".

What you need to know is this: Psychosis has nothing to do with either of those tropes.

I was diagnosed with schizophrenia in 2012 at just 22 years old. Later, my diagnosis shifted to schizoaffective disorder, depressive subtype. As the earlier definition stated, this means that I hear voices and also experience a depressed mood. Luckily, I have health insurance which allows me to get my medication for substantially less than it would be without insurance. In fact, if I didn't have health insurance, I would be paying $360 for my Geodon alone. Geodon is an atypical antipsychotic medication that prevents me hearing voices and seeing things that don't belong there.

So what is psychosis exactly?

It means that there are times when my relationship to the world around me becomes disconnected. Some websites describe psychosis as a detachment from reality, and this is true.

Both psychotic and mood disorder symptoms are present in schizoaffective disorder and, just as there is more than one type of mood disorder, there is more than one type of schizoaffective disorder:

Manic type: In this type you have both psychotic and manic symptoms occurring within one episode.

Depressive type: In this type you have both psychotic and depressive symptoms occurring at the same time during an episode.

Mixed type: In this type you have psychotic symptoms with both manic and depressive symptoms. However, the psychotic symptoms are independent and not necessarily related to the bipolar disorder symptoms.

As I said earlier, I have the Depressive type, which means I've experienced psychosis at the same time as I've felt low. My episodes of psychosis have decreased dramatically since I started taking Geodon over nine months ago. Prior to that, it would be difficult for me to convey exactly how often I experienced psychotic episodes. At a minimum, I'd have to say I experienced strange and unusual things, such as visual and auditory hallucinations on a near-daily basis. To put it mildly, Geodon has been a godsend.

Having schizoaffective disorder means I also struggle with financials, holding down a job and even interpersonal relationships at times. I really screwed up my credit because I was so disorganized throughout my twenties not having the proper treatment and medication to help keep me on track. I've lost relationships because of my paranoia and probably because of my debt as well. I've had trouble completing coursework because I couldn't concentrate on anything but what I perceived was real (which wasn't, such as hearing voices in the room talking about what a failure I was).

Eventually, I did go on to complete my Bachelor's in Liberal Studies with an emphasis in Culture & Media Studies from UMass Global back in 2015. I even earned a Master's in Educational Leadership and a Master's in English and Creative Writing with an emphasis in Screenwriting. How did I manage to accomplish this? By going to school online and advocating for my needs through my schools' Office of Disability Services. I'm proud to say that I currently work for my alma mater as a Faculty Services Specialist, and I am excelling at my job. I love what I do, I enjoy my colleagues, and can safely say I've never had a more supportive and collegial supervisor.

I'm about to be 32 next month, and I can finally say I'm in recovery. I have to credit my friends and family with helping me get to this place in my life as they have served as a constant and steadfast source of support and love in one way or another, which are crucial factors for anyone hoping to recover from an illness as gripping and ugly as schizoaffective disorder.

Not everyone with the disorder experiences this kind of outcome. Many people in my position end up on the streets because they cannot afford the medication or treatment that is necessary to become stable so they can hold down a job. It's hard to go to work when you're hearing voices constantly, or are seeing things that other people don't see which often present as threatening or dangerous. They distract you from being able to concentrate and lower your mood to dangerous levels. It can cause you to become so frustrated that eventually, you try to end your own life. I have tried to overdose on at least three separate occasions, just so I could stop hearing those damn voices. Just so I could finally have some peace. My self-esteem took a massive hit because I screwed up my finances so badly, I thought I would never be able to come back from the hellhole I had dug for myself.

Finding the right therapist and psychiatrist has also been vital to my recovery. You need to find someone who will listen to you and respond to your needs with an open mind and yes, an open heart. It's not enough to just have medication, it's critically important to have a therapist who genuinely cares about your progress. I have been fortunate to have such a therapist, and to receive financial aid that allows me to afford to see her weekly-sometimes twice-weekly depending on what's going on and how bad my depression is at any given time.

I may be in recovery, but I will always face hardships because of the cognitive and social deficits I still contend with on a daily basis. Verbal memory, executive function, decision-making ability and attentional measures are often impaired due to having this disorder. During my depressive episodes, I am prone to self-isolation, disorganized thinking and poor personal care. I never know when or how bad these episodes will be until they happen. The one thing I try to remind myself of is this: When I feel depression creeping in, that is when I need to reach out to my friends and family the most. I also need to reach out to my therapist so she knows I'm struggling, too. I can't just crawl underneath the covers. Well, I can, but I still take my phone and start texting my best friend or hop on Zoom with my Trekkie family. Yes, I'm a hardcore Star Trek fan and I belong to a nerdy-cool Star Trek fan club. To be quite blunt, it has saved my life.

So what do you need to know about schizoaffective disorder?

People who suffer from this disorder can become psychotic, but the experience can be more frightening to the person experiencing voices or seeing things than to the people who don't experience these things.

People with schizoaffective disorder and schizophrenia proper are not usually dangerous. In fact, we are more likely to be victims of crime than perpetrators. The danger comes into play when we feel threatened, such as instances where we might be hearing voices telling us to hurt ourselves or others, or where we might be seeing something frightening that we want to defend ourselves from.

For example, before I was able to get onto medication that worked for me, there was one time when my friend's face became distorted in a way that is difficult to describe as anything less than demonic, and I perceived her to be coming at me in a menacing way. Her arms were outstretched as if she was going to try and choke me. My instinct was to raise my hands to try and push her away. The reality was that she was concerned about me and her outstretched arms were so that she could hug me. I had simply misinterpreted her behavior and reacted in accordance with what I perceived to be happening at the time.

Another thing you need to understand is that my memory isn't as great as it should be. I was a Drama kid in high school, and I prided myself on always being the first one to be off-book, meaning I had memorized all my lines without needing to prompt the Stage Manager for help. This was, of course, before I developed schizophrenia/schizoaffective disorder. Around the time I turned 21, I was cast in a production of Pride and Prejudice as Mrs. Bennett, and found myself struggling to memorize my lines. This type of memory problem also affected my speech. I would forget even the most basic of words and phrases. The problem has also affected my ability to remember the words to my own songs, and even some of my favorite tunes.

Another problem I struggle with is delusional thinking. My therapist has helped me a great deal with this, but there are still intrusive thoughts that pervade my consciousness, such as the belief that there is something wrong with me that will never be cured or fixed. That my brain is inherently defective. In the throws of my disorder, I used to believe I was receiving special messages from a dead French actress named Edwige Feuillere. This belief actually put me in danger one night when I believed I was being called to meet her in Heaven and ended up sitting in the middle of the street at two o'clock in the morning.

I often begin sentences and stop abruptly. Sometimes I jump from topic to topic rapidly and can be difficult to understand or follow. At times of deep depression or psychosis, my affect can be blunted, I have trouble follow through on simple plans, and I sometimes suffer from a poverty of speech. I often have difficulties with paying attention and can be easily distracted. Sometimes, I have issues being able to fall asleep or will wake up early in the morning several hours before I need to be up for work, and I will be unable to get back to sleep, which leaves me sleep-deprived as hell. During depressive episodes, I feel a significant loss of energy and will cancel plans to go out because I just don't feel "up to it". I also have recurrent thoughts about death. At the height of my psychosis, I would believe I had died and was dead and nothing anyone said to me could change my mind.

Finally, I often feel worthless and guilty about things I've done or not done. There are times when I believe this so strongly that I give up on plans I have or projects I've started-even if they show great promise because I think there is no point to keep trying. Sometimes I become so indecisive about things, I simply give up even trying to make a decision at all.

As I said before, whenever these negative symptoms crop up, I reach out to a friend and my therapist to refocus my mind on who I know I really am: a decisive, positive go-getter with a lust for life and the skills to take me to great places in this world.

Gene Roddenberry said, "It is the struggle itself that is most important. We must strive to be more than we are. It does not matter that we will not reach our ultimate goal. The effort itself yields its own reward."

No matter what movies and television may say about disorders like schizophrenia, or even schizoaffective disorder, we are people first. My life has been fraught by hospitalizations and failures, but more than anything, I know that I'm capable of becoming more than my illness. I've come a long way, and I look forward to the rewards of the journey that still lies ahead of me.