What Living With a Psychotic Disorder Feels Like, As a Mental Health Professional

<p>Verywell Mind / Joules Garcia</p>

Verywell Mind / Joules Garcia



Takeaway

If you or a loved one are struggling with a psychotic disorder, contact the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline at 1-800-662-4357 for information on support and treatment facilities in your area.

For more mental health resources, see our National Helpline Database.



I’m a licensed mental health professional, but I’ve also been living with schizoaffective disorder bipolar type for more than a decade. Schizoaffective disorder is basically like bipolar disorder’s and schizophrenia’s greatest hits—I experience both mood disorder symptoms (like depression and mania) and psychotic symptoms (like hallucinations and delusions).

Psychotic disorders can be scary, both for those experiencing them and their loved ones. Here, I’ll break down my positive and negative symptoms and explain what it’s been like for me to deal with psychosis.

My "Positive" Symptoms

Psychotic disorders are characterized by two different types of symptoms: positive and negative. But these descriptors don’t mean my symptoms are good or bad. Positive symptoms “add to” or “distort” my experience of the world, and include hallucinations (seeing, hearing, smelling, tasting, and/or feeling things that are not really there), delusions (believing things that are not true), and disordered thinking.

My Hallucinations

For the most part, my hallucinations are visual; I don’t generally hear voices (a very common kind of hallucination). Mostly, I see bugs. I’ll see them crawling on the floor or the walls, and sometimes, I even feel like bugs are crawling on my body.

While that particular sensation is disturbing, seeing the bugs really doesn’t bother me anymore—it’s become a part of my daily experience (and is the only symptom I’ve ever had that has never been affected by any medication—I see the bugs no matter what). These hallucinations get worse when I am stressed.

I also experience something called “passage hallucinations.” This is when I see movement in my peripheral vision, like shadows passing me. Usually, these shadows look like people. I have also experienced very convincing hallucinations of people showing up beside me or even right in front of me.

I’ve also seen “people” stand or sit down next to me or reach through a door that’s been left ajar. Unlike the bugs, these experiences are unnerving. And although over the past decade or so, I’ve gotten pretty good at figuring out when I’m hallucinating and when I’m not, it can be difficult sometimes—especially when what I’m seeing feels like a cheap jumpscare out of a horror movie.

I’ve found that it’s important to be patient and understanding with myself when I’m hallucinating. It’s also helpful to share what I’m seeing or feeling with loved ones who understand what I’m going through. Not only can they offer support when I am stressed or scared, but they can also help me reality-check—if no one else can see that person or that giant bug sitting across the room, chances are, it’s not real. This can help calm me down and get me back in touch with reality.

My Delusions

I have found my delusions to be much more frightening than my hallucinations.

Delusions like these—called persecutory delusions—convince me that I am in danger. I’ve also experienced delusions about body-snatching—for example, being absolutely sure that my therapist was not who she said she was and refusing to speak to her until the delusion passed.

Sometimes, my delusions are directly connected to my hallucinations. Bugs might be trying to attack me or eat me, or a face appears on my bedroom wall that I know would hurt me if it could. (These hallucinations are the hardest ones to recognize as hallucinations because they have emotion and conviction behind them.)

Usually, my delusions don’t last long; anywhere from a few minutes to a few hours, and occasionally days. I’m aware that my experience is different from that of many others, whose delusions can last indefinitely (and are often only stopped with medication). My experiences tend to be episodic.

I have learned that reaching out to a loved one who understands what is happening to me when I am experiencing a delusion is helpful. Even if they can’t convince me that what I think is happening isn’t real (more on that below), they can provide emotional support until I am feeling better.



Takeaway

As a rule, I don’t recommend trying to convince someone experiencing a delusion that what is happening isn’t real because, although technically that’s true, their emotions about and their reactions to the delusion are very real. Instead, recognize that they are experiencing something difficult and scary and let them know that you are there for them.



My Disordered Thinking

When I am experiencing psychosis, I often find it difficult to think clearly—I usually say it feels like my brain is stuffed with cotton. I can’t make simple connections and expressing myself becomes very hard. This sometimes comes across as “word salad,” or speech that doesn’t make sense.

Executive functioning also usually goes out the window when I am symptomatic. “Executive functions” refer to things like being able to concentrate, multitask, and manage time. When I am feeling thought-disordered, it feels impossible to focus.

Personally, this is one of the most frustrating aspects of having a psychotic disorder. I have a full-time job that requires lots of critical thinking, and it’s incredibly discouraging—even excruciating—when my brain “stops working.” These episodes are often random and impossible to predict (unless I’ve forgotten to take my medication, in which case I can count on being symptomatic the next day), making them that much more insidious.

Related: What Are the Effects of Impaired Executive Functions?

My "Negative" Symptoms

Negative symptoms “take away” things from my experience of the world. Often, my psychosis is accompanied by anhedonia, or the loss of pleasure or interest in things that otherwise I normally enjoy. It’s like a switch gets flipped in my brain—everything feels dark and dull, and all I can do is sit wrapped in a blanket and try to feel what I call “contained.” (When I’m symptomatic, the world can feel too big; being swaddled helps this feeling.)

I also tend to withdraw; I don’t want to talk to anyone, because talking feels really hard—this is called “alogia”—and I just want everyone to leave me alone—a sign of “asociality.” When I do speak or interact with someone when I’m having negative symptoms, my intonation and facial expressions are noticeably flat—it’s as if I’m not feeling anything at all (even though, on the inside, I’m in deep pain). I also find it extremely difficult to be motivated (“avolition”), especially when I’m also experiencing disordered thinking.

My Somatic Symptoms

I often experience symptoms somatically as well—I feel physical pain or discomfort in my body when I am having psychological symptoms. My chest can feel either very tight or cavernous, like there’s a black hole in the middle, and often my hands and arms will hurt or burn. This is often when I feel like being “contained” is helpful—so that I don’t feel like I’m being crushed by the wide openness of the world.

My Challenges

I was misdiagnosed with clinical depression in college, then misdiagnosed again with bipolar II disorder in my young adulthood. I had my first psychotic break in February of 2013, followed by two short psychiatric hospitalizations. It took nine years, three psychiatrists, two therapists, and about 30 different medications to get me correctly diagnosed and on medication that made me able to function the way I needed to.

I was experiencing psychotic symptoms regularly as I went through two years of grad school to obtain my master’s in social work. In fact, I was (illegally) fired from my first internship for having a delusional psychotic episode in the office during my lunch break.

The psychiatrist I worked with for years (who misdiagnosed the bipolar disorder) at one point told me, “Imagine what you could do if you weren’t so sick.” I will never forget that.

And My Successes

Despite being “so sick,” I made it through NYU’s graduate social work program with a 4.0 GPA.

I completed two challenging internships working with people with serious mental illness, with whom I felt I could earnestly and honestly connect precisely because of my own struggles.

I designed and ran a mental health program for those at high risk of psychiatric hospitalization that provided both individual and group support.

And now, I write and edit mental health content as a mental health care professional to connect readers with the resources they need.

The Many Faces of Psychosis

My story, just like anyone’s story, is unique to me—I do not pretend to represent the experience of psychosis completely. In fact, in my clinical work as a social worker, I’ve seen just how varied and kaleidoscopic psychotic symptoms can be.

I worked with a few people, in both residential and day programs, who communicated completely with word salad. You could tell they knew what they were saying, but often got incredibly frustrated when the staff could not understand what they meant. Asking questions and showing genuine interest in what they were trying to communicate demonstrated to them that what they were feeling was important.

One woman in the residential program made detailed and indecipherable charts with patterns of letters, numbers, and days of the week. They made sense to her, and we had many conversations about what they meant and why it helped her to make them. When I left that job, she gifted me one of these charts—it’s on the wall of my bedroom.

Unfortunately, I met many people who were in treatment because of tragedy and extreme hardship. One day a program participant heard voices telling her to kill her mother—in order to stop the voices, she stabbed herself in the chest instead. One resident was incapable of carrying out ADLs—activities of daily living—because of his symptoms. We had many conversations about showering, cleaning his room, and washing his clothes, but these skills were too challenging for him and where he was then. Another member of the residential program was tormented by visions and aural hallucinations of a little boy who mocked him.



Takeaway

But, as I said, these experiences are not everyone’s experiences. People living with psychosis can build and maintain relationships, be incredibly creative, and succeed at work or other endeavors. Members of the day program had best friends there and continued to attend year after year because of those relationships; I met prolific artists, poets, and musicians through these programs; and many people (including myself) continually set and met personal goals.



Final Thoughts

I have spent more than a decade coming to terms with and managing my psychosis. I have received help from professionals, family, and friends. I’ve gone to work on days when I couldn’t think straight; I’ve traveled on days when I felt like going outside would kill me.

Living with psychosis is filled with a wide variety of challenges and experiences, and won’t ever look the same from one person to the next—but hopefully, reading about my personal challenges and experiences has shed some light on what a psychotic disorder diagnosis can mean.

Related: Treatment for Psychosis

Read the original article on Verywell Mind.