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Living with Schizoaffective Disorder

It was Spring. And I was sitting across from a curt Russian lady.

"Schizoaffective Disorder."

That's what the psychiatrist (and many others after her) would say to me in her office. I had never heard of it. Many people haven't. My parents were at their wit's end. I had lost hope. I didn't care anymore. This new term she had handed to me was useless, I thought. After five years of medication and therapy for depression, OCD, Bipolar Disorder, and Social Anxiety Disorder, at 20 years old, this new diagnosis didn't seem to change anything. No one seemed to know what the hell they were talking about, what the hell to do with me. I often considered that maybe I was just a wimp, that everybody felt the way I did and just had a better way to cover it up, to cope.

One of the letters I received from family, while I was in the hospital.

It wasn't until I got out of the hospital that summer that I decided to research my new diagnosis. Confined inside the psychiatric hospital, I had met people like me. I finally saw my unique and personal symptoms in other people. They saw things, too. They had delusions, too. I remember a friend of mine in the hospital pacing the halls at night. He was usually Mr. Smooth, flirting with everyone, cracking jokes. But as I walked toward him, he looked up and I saw a strange glimmer in his eyes. Something had changed. He was different. He grabbed hold of my arm, too hard. "There are bombs in the Pacific Ocean. Bombs. There are bombs in the Pacific Ocean. God told me!" He repeated variations of these sentences over and over. He was trying to warn me. He had a message from God. God was talking to him. God was warning us.

I pulled away from my friend, finally. He was scaring me. He began pacing again, yelling about the bombs. It was the first time I had witnessed a psychotic episode in someone else. My friend didn't seem to be in there anymore. It was terrifying. It was sad. I spoke with the nurses, and then walked back to my room and realized for the first time that I finally understood what my family and friends felt like when I had an episode. When I woke up in my sister's bed, screaming and crying about a dead girl spying on me through the windows, waiting to break into the house, and kill me when no one was looking... my sister must have felt similar to how I felt now. I pulled the blanket under my chin and curled up in my hospital bed. My roommate was snoring softly. I stared at the door to our room for as long as I could until I fell asleep. I was afraid my friend was going to sneak in to rape and kill me. I had informed the nurses of this fear before I went to my room. They reassured me. They said they were keeping an eye on him. Etcetera. They didn't understand that he was evil. That he was the devil, the antichrist. I didn't know it at the time because I thought my fears were rational but his episode had triggered me. So badly that I didn't speak to him for the rest of my hospital stay. I couldn't get past my delusions to see my friend again.

At the library, that summer after I was released from the hospital, I couldn't find anything specifically on Schizoaffective Disorder, so I checked out a few books on Schizophrenia and Bipolar Disorder. I remember feeling like a freak, carrying Schizophrenia for Dummies around with me wherever I went. Sometimes I would hide it, and sometimes I would leave it on the table for everyone to see at family gatherings. Everyone knew, but we didn't talk about it openly, only behind closed doors one-on-one, as if to contain the tragedy in some way. I was ricocheting between one extreme (not talking about it at all) and another (talking about it constantly, watching people clam up and get uncomfortable as I described my hallucinations). I remember one instance, specifically, when I had Schizophrenia for Dummies in my lap. Someone saw it and decided to inform me that I didn't have Schizophrenia. I blushed deeply. I was humiliated. Did they think I thought having Schizophrenia was cool? That I wanted to be apart of some exclusive club, but didn't meet the requirements?

Source

"What you have is different," they said, or something along those lines. I wanted to open my mouth, but I didn't. I was too shocked. They had ripped one of two terms away from me that I was clinging on to, desperately hoping to squeeze some sort of hope or truth or meaning from. I was confused and angry. I wanted to tell them that there weren't any books on Schizoaffective Disorder, so I had to settle for this one. I felt like crying. I'd already been diagnosed with Bipolar Disorder the previous Fall and read everything I could on that, so I was more interested in my schizophrenic symptoms. I was doing all I could to learn about my new diagnosis, this sort of dangerous, unreliable bridge between two distinct illnesses. Was I a freak or not? Was I some sort of half-freak? Was I a genius? Just as I was settling down into two terms that helped me identify my symptoms, let me know what I was up against, what I needed help with, etc, the chair was yanked out from under me, and I fell on my ass. I wanted to shout,

"Just tell me what is wrong with me!"

But I didn't shout. I was silent. And I believed them. I thought I didn't have Schizophrenia. Right then, and right there, my psychotic symptoms broke free from my grasp and became incomprehensible once again. Labels aren't usually good things, but being able to look up my symptoms and identify them is a huge advantage. Knowing I struggle with extreme paranoia, hallucinations, and delusions enables me to be one step ahead of the game. Scary movie about spiders? Can't watch it unless I want to be followed by spiders the size of cars and eaten by them in my sleep. I know my triggers better when I know what my symptoms are. I know ME better when I know what my symptoms are because I know where they end, and I begin.

Fast forward a little over a year later, and here I am, finally accepting that I DO have schizophrenia, a specific kind of schizophrenia. That, and Bipolar Disorder. I have two different illnesses. For a while, it was hard to find anything specifically about Schizoaffective Disorder, so I just researched Schizophrenia and Bipolar Disorder separately. Lately, I've been finding more and more material about my illness, though. So, let me clear things up: People who suffer from Schizoaffective Disorder suffer from both symptoms of a mood disorder and Schizophrenia. I have Bipolar-type Schizoaffective disorder, meaning I suffer from manic episodes, depression, and Schizophrenia. Unipolar Schizoaffective Disorder is characterized by Depression and Schizophrenia. Make sense? Maybe this link will clear things up.

Remember that everyone is different. Everyone is unique. Everyone is special and deserves love. Don't try to tell someone what they do or do not struggle with. If you are curious, ask. Politely. Respect their decision to answer you or not. Above all, be respectful. We are not zoo animals. Our life experiences aren't for you to marvel at or ridicule. The best website to use is nami.org if you want to learn more about your illness or that of someone you know. There are even programs for family members of those suffering from a mental illness to learn more. They can be found here. Before you open your mouth to tell your friend, acquaintance, or family member that they aren't this or that, try educating yourself.

You've Been Diagnosed with a Mental Illness. Now What?

1.  Find a psychiatrist that takes you seriously.

Psychiatrists can be expensive, but they are extremely important to your recovery. Find one that you feel comfortable with, one that listens to you and takes you seriously. You're paying for their services, so if they kick you out after five minutes, then are they really taking enough time to listen to your personal story, your symptoms, and what you want to work on? It can be embarrassing to admit that you suffer from suicidal thoughts or that you hear voices, but the more honest you are, the better equipped the doctor is to help you fight your personal battle. Don't let the doctor walk all over you. Put your foot down if you don't want to take a certain medication, or if you feel like you are not being heard. This is your life, your story. Take control of it.

 2.   Find a counselor that you trust.

You probably have a lot of thoughts, feelings, and concerns about your diagnosis and what this means for your future. A counselor can help you set up an action plan for your recovery. Making a list of warning signs that things are going downhill and you need help, what medications you take, and who your emergency contacts are is just a few things you might want to do to get started on your recovery plan. A counselor can listen to your concerns and view them from an outside perspective unlike a friend or family member. Furthermore, they have been specifically trained to help you with your problems. They know your story, top to bottom, unfiltered. Therefore, they know the best ways to help you stay in school, get and keep a job, and maintain healthy relationships. Many churches have free counselors, as well as schools and colleges.

3. Build a support group.

Suffering from a mental illness can be lonely and hard. Feeling misunderstood is common. Friends and family can be helpful. They know you best and can tell when you're having a hard time. However, make sure you are connected to a few people who know what it's like a have a mental illness. There are plenty of Facebook groups you can join that offer support. Admins of the groups post daily medication reminders, and members of the group often compare the side effects of medications. You can read the stories of people just like you all over the world struggling. It does a world of good to know that you are not alone. If you want to meet people in person, you can search for a NAMI support group near you at http://www.nami.org/. As strange or unique as your illness can be, you'd be surprised how many people suffer from the same symptoms as you do.

4. Learn coping skills.

Over the years, I have learned that coping skills are the #1 thing to have in your mental health toolbox. They are free of charge and never run out. For panic attacks and general anxiety, breathing exercises are helpful. Simply focusing on your breathing can divert your focus away from whatever is causing the anxiety. Meditation is helpful in clearing and calming the mind. Simply searching guided meditation on https://www.youtube.com/ and listening with headphones can promote relaxation. Progressive muscle relaxation and guided imagery are also ways to divert your focus and reinstate a sense of calmness. Stretches are good for loosening up tight, stressed muscles and exercise releases endorphins. Coloring is a more popular stress relief, as well. There are so many coping skills to discover. You just have to find out what works best for you.

5. Educate yourself.

Educating yourself on your mental illness is one of the most important things you can do to ensure recovery. Go to the library or search the web. Knowing what you suffer from can help you fight it better. Identifying your symptoms is the first step in recovery. For example, if you know you suffer from social anxiety, you can prepare yourself before speaking in front of the class by doing breathing exercises before it is your turn to do your presentation. Furthermore, figuring out where your symptoms end and where your personality begins helps you know what you are fighting. You are more than your illness. You have purpose and strength and love to pour out into the universe. Be the best you that you can be. Educate yourself and those around you. End the stigma in yourself and in the world. Accept and support each other in unconditional love and understanding.