Our Family’s Experience with Schizoaffective Disorder

When my daughter was 10 years old, she started experiencing some disturbing symptoms – zoning out, having conversations with herself, inability or unwillingness to take care of herself, extreme mood changes including depression and manic episodes, paranoia, hallucinations, self-mutilation and episodes of rage and aggression.


The entire family was confused and so scared of my daughter. We never knew when the next blow-up or manic high would be or what words she’d speak at any given moment – whether loving, silly, nonsense or hate-filled verbiage. We all felt we were walking on egg-shells in order to keep some sense of peace in the house. We did what we could to ease her anxiety and moodiness (as well as ours) and try to live in a “normal” house. It didn’t work though. She (and the rest of the family) desperately needed professional help.


She was first hospitalized at age 11 in a child psychiatric ward and eventually diagnosed with schizoaffective disorder. In a way, I was relieved that there was a formal name to her symptoms. I could face it head-on that way. But schizoaffective disorder? What the heck was that?


Schizoaffective Disorder Symptoms


Schizoaffective disorder generally appears during the late teens or in early adulthood – between the ages 16-30. The disorder occurs more in females than males and rare in children.


The National Alliance on Mental Illness (NAMI) states, “Schizoaffective disorder is a serious mental illness…thought to be between the bipolar and schizophrenia diagnoses as it has features of both.” Please see NAMI’s schizoaffective disorder fact sheet for more information – http://www.nami.org/factsheets/schizoaffective_factsheet.pdf.


It’s thought that individuals diagnosed with schizoaffective disorder have a better long-term prognosis that those with schizophrenia but less than those with mood disorders such as bipolar disorder. Symptoms of schizoaffective disorder include:


* paranoid thoughts

* delusions

* hallucinations

* irritability/agitation

* extreme moods – hyperactive to depressive to catatonic states

* thoughts of suicide/homicide

* disorganized thinking/speaking

* problems paying attention and focusing

* racing thoughts

* poor hygiene and physical appearance

* sleep disturbances

* self-destructive, dangerous or odd behavior


Preparing for a Dr’s appointment


The Dr. will ask for a complete medical history and will perform a physical exam. There are many things you can do to help the Dr. during the initial appointment.


* write down symptoms/episodes that your loved one has experienced (you won’t remember everything so making a list is important)

* write down any significant life changes – death, divorce, birth, adoption or relocation to a new area

* write down any medications your loved one takes – both prescription and over-the-counter

* make a list of questions (such as: What is causing the symptoms? Is this temporary or permanent? What treatments do you recommend? What medications are necessary and what are the side effects? What kind of help is available for the family?)

* help prepare your loved one for the appointment – make sure they know that you love them, are trying to help them feel better and that they are safe in talking honestly with the Dr.


Available Treatments


Although there is no cure for schizoaffective disorder, there are many treatment options available. Often a combination of these treatments will work best for your loved one and the rest of the family. They include:


* medications – antidepressants, antipsychotics and mood stabilizers

* hospitalization

* psychotherapy

* individual counseling

* group therapy

* family counseling


It has now been 8 years since the schizoaffective disorder diagnosis. Life has been a whirlwind of ups and downs. Although my hopes and dreams for my little girl were shattered, I love her. Always will. I do all that I can to learn of the disorder and how I may help her make it through life. I know that I’m not alone and hope you know that too.


What has been your experience with schizoaffective disorder or any other type of schizophrenia or bipolar diagnosis? How do you cope?


Please share your comments below…


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  1. I am a mother with schizoaffective disorder I have gone through hell and back w the disorder. I have gone through a divorce had to move in with my mom to another state BC of problem I was having on my own .lost custody of my kids which now they found the correct meds and I have treatment team in my home state near my kids. I have per worker and basically having to start all over I’m in a group home till my apt opens up. I self medicated and blew too much money I didn’t have got in trouble with the law w my ex husband.I just haven’t been thinking clearly. Lost good friends only to realize they were never friends.I am saddened I ever did leave my husband knowing I should have accepted my mental illness.much of the time I’m lonely.currently looking for work and I get ssi. Anyways all I can do is pray that this isn’t it and it will get better w time.

    • So sorry to hear you’re going through so much. I’ve always thought that “with God, all things are possible.” Keep praying and doing the best you can. Everything will turn out just as they are supposed to. Thanks for reading my blog and I wish you all the best…

  2. I’m with anonymous. I was diagnosed at age 13 and went into a behavioral modification in-patient program (I have a mental block on all the therapy so I am assuming the behavioral modification was hypnosis-based). I have never been medicated (although I am seeking that now). I am very high functioning and very successful in my career. The lack of medication means I am required to spend more mental energy battling with myself (hence why I am seeking treatment 30 years after my initial diagnosis; it really wears you down after a while and increases the prevalence of suicidal thoughts). I also see the same symptoms I have in my youngest son (age 13). I believe that with a significant IQ you can develop a mental fortitude for a lot of the symptoms (i.e., intellectualization of what’s happening inside my head) although there are some I have come to realize are unavoidable (like the depression; again back to the reason I am finally seeking medication). If it wasn’t for my mother quitting her job when I was 13 to put me into a program (for which she and my father had to be trained to deal with me) who knows where I would have ended up. Your daughter has a future as bright as she wants it.

    • Thank you for your comments – I appreciate it! Yes, we are working hard to help my daughter see that she has a bright future. We’ll get there…

  3. She is lucky to have such a caring family, please know that there is hope. I have schizoaffective disorder and am a mother and at the top of my career. I will always need medication but it has improved with age, understanding and self awareness