4 Things I Learned From Getting My Schizoaffective Diagnosis

I was diagnosed with schizoaffective disorder in the beginning of April. Having just been released from a psychiatric hospital and only feeling slightly better than when I had gone in, I was adrift in my own mind, the waves lapping over my leaky boat of sanity. I was said to have bipolar disorder in 2010 by a doctor in a psych ward, and that diagnosis followed me for the next seven years, never being questioned or tested. Finally, after seven years of medication not helping and my mental health worsening, a doctor at my new outpatient counseling center did a full psychological evaluation and determined that I did not have bipolar disorder. He explained I had schizoaffective disorder. Schizoaffective disorder is, according to NAMI, “a chronic mental health condition characterized primarily by symptoms of schizophrenia, such as hallucinations or delusions, and symptoms of a mood disorder, such as mania and depression.” Even though I waited for years for the correct diagnosis, it was not in vain because I learned several things from the process.

1. It’s important to be your own mental health advocate.

My most recent stay at a psychiatric hospital — still carrying the bipolar diagnosis — showed me some doctors are more worried about what the insurance companies say. Still actively suicidal, I was informed that my insurance company and the doctor said I was ready to go home and would be discharged. I told the doctor, nurses, my social worker and mental health technicians about my active suicidal urges and plan, and none of them listened or believed me. Terrified of what would happen if I was discharged in such a state, I finally spoke with a different social worker and he interceded on my behalf. My medication was adjusted and the suicidal urges disappeared. Had I not continued to speak up, to be my own advocate, I may very well not be alive to write this.

2. Finding answers to why you are experiencing your mental health symptoms is possible.

After three years of a depression diagnosis and seven years of a bipolar disorder diagnosis — and still no answers to why I was psychotic with and without mood disorder symptoms — I had started to believe I was just flat out “crazy” and no one could help me. In the time leading up to my psychiatric hospital stay, I believed I was “insane” and there were no answers or help for me. Even when I was released from the hospital, not suicidal but still delusional and severely depressed, I doubted much could be done for me. But then I received my schizoaffective disorder diagnosis, my medication was adjusted, and I was enrolled in an intensive outpatient therapy program. Slowly, things began to get better. Now, though I still experience some psychotic symptoms and depression, they are not anywhere near as bad as they once were. I am on the path to recovery, finally.

3. If your current treatment isn’t working, it’s important to take action to change it.

Prior to entering the psychiatric hospital this most recent time, I had been going to a counseling center. The medication they were prescribing me was not working, and each appointment I would explain this and the doctor would respond by raising the dosage of the medication. Finally, we reached the highest doses on all my medications. His response was to add an antidepressant to the mix, despite being aware that I have been put on nearly every antidepressant with the same results. My condition worsened and I was becoming suicidal. Finally, I realized this doctor and his treatment plan were not effective for me and switched doctors to the one who diagnosed me with schizoaffective disorder. Not all doctors are of the same skill level, and not all doctors are a good fit for all patients. Being able to recognize when your care is simply not effective and doing something about it, is essential.

4. A support network is vital for mental health recovery.

I learned how important my support network was when I was first diagnosed with schizoaffective disorder. I was terrified by the diagnosis, initially. My dad researched it online and explained it to me. My fiancé came with me to a mental health support group because my anxiety was so bad I could not go alone. My best friend reminded me what fun was by taking me out to eat and then to see a hilarious movie. My sponsor from Alcoholics Anonymous endured my string of anxiety-ridden text messages and reassured me that the meetings were a safe place and that no one would judge me because of my mental health. Without this support network, I could have very easily fallen into a deeper depression, isolating in my bedroom, pushing away the world. But my friends and family were there for me to help me when I could not help myself.

My diagnosis was delivered 10 years after it should have been. It would be easy to be bitter about that fact, but instead I am accepting of it because I have grown in my mental health recovery and as a person through this 10 year journey.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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Thinkstock photo via Tischenko.

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