I’m hoping someone can clear this up for me. One of my uncles has schizoaffective disorder. He was originally diagnosed with paranoid schizophrenia after he had his first psychotic break at 19. Over time, he has become increasingly emotionally labile and in addition to constant paranoid delusions and auditory and visual hallucinations, he is prone to severe depression, and manic episodes involving extreme fits of rage (which often lead to violence.)
He is one of the most non-functional human beings I’ve ever met. You don’t even have to start talking to him to know that he is crazy–you can spot his crazy from three blocks down. His speech pattern is completely disorganized, he was hospitalized 8 times once in a single summer, and he is constantly being thrown out of his apartment due to destruction of property. Due to his history of violent outbursts, he has been court mandated to receive his medications via injection. He cannot work and is dependent on others to frequently visit, take him grocery shopping and make sure he’s not a danger to himself or others.
For most of my life, this has been my understanding of schizoaffective disorder… basically schizophrenia and bipolar combined–a nasty, vicious, brutal combination that has transformed my brilliant, kindhearted uncle into a miserable social recluse.
Yet, increasingly over the last year or so I have heard people refer to schizoaffective disorder in a way that challenges my understanding of it. I was recently stationed as an intern (I have since been transfered) at a partial-care hospital for mentally ill child abusers, and schizoaffective disorder, when referenced, seemed to be viewed as some kind of bipolar with occasional psychosis. I’ve even seen apparently rational people on this board suggest that they have been diagnosed with schizoaffective disorder or are convinced they have it.
My knee-jerk reaction is, ‘‘Then why aren’t you behaving like a complete effing loon? Why are you not ranting about particle physics and your explosive diarrhea and how ‘‘they’’ are sending messages through your television? No cheesecake in your cigarettes? No dead bodies in them either? You don’t believe people are poisoning your food? Haven’t recently set your apartment on fire? Then how are you schizoaffective?’’
I’m not so dense I don’t grasp that mental illness severity can exist on a spectrum, but I feel like every example of schizoaffective disorder I’ve encountered lately pales in comparison to what my uncle is dealing with. Am I completely misunderstanding the characterization of this disorder? Are people confusing it with schizotypal personality disorder? Is my uncle just a really, really extreme case? A possible misdiagnosis? What gives?
I have no expertise in this area, but I can tell you that my mother-in-law has schizoaffective disorder, and her case seems much more like the milder cases you describe. In fact, she was misdiagnosed as bipolar for years. In the eight years I’ve known her, she’s only had two episodes, only one of which was severe enough to require hospitalization (although that one was a doozy). She is in a nursing home, but that’s for nearly unmanageable diabetes, not her mental illness.
The line between Schizoaffective Disorder and Bipolar Disorder with Psychotic Features is sometimes a bit blurry. According to the DSM-IV-TR, the main difference is that in Schizoaffective Disorder, the psychotic symptoms are present for at least two weeks in the absence of any major mood disorder symptoms. So, if your uncle is psychotic during a period of time when his moods are relatively stable (or fluctuating in a “normal” way), and that period of time is at least two weeks, then Schizoaffective Disorder is the correct diagnosis.
However, if your uncle is ONLY psychotic when his mood symptoms fit the criteria for a full-blown mood episode (either depression or mania), then he most likely has Bipolar Disorder with Psychotic Features.
And the differences between those two disorders and Schizophrenia also tend to be difficult to accurately identify, especially in people who are as ill as you describe your uncle.
Yes, all of the above disorders exist on a spectrum of severity, and it does sound like your uncle is unfortunately at the most severe end of the spectrum. I’ve worked with clients with those diagnoses who are as disabled as your uncle, and I’ve worked with others who are not nearly as disabled.
I suspect I have schizoaffective disorder. It hasn’t been diagnosed, because I really, really didn’t want to bring those symptoms up to the doc when I went; it’s also possible that I’m being a hypochondriac, so I’ll give you that caveat.
I mood swing like crazy. Mixed states are common. I have occasional delusions; I sort of half recognize them as false when I have them, but not really. I have occasional auditory hallucinations. I don’t really want to get into what they are. Dysphoric states are common, but I don’t think I’ve ever had a major depressive episode without having some sort of medication causing it. I think I’m having a really, really bad reaction to an anti-allergy medicine right now, because I’m swung way down, and it’s probably the only reason I’m sharing. Normally, I gloss over all of it, or just don’t mention it.
Hypomania is common, but not as common as I’d like, as that’s when I’m actually really productive. When I get into the phase of “believing shit I half know not to be real and half am utterly convinced is”, I socially isolate. This sucks, and makes it hard for me to maintain friendships that require physical presence.
In terms of functioning. . .well, I do, mostly. Medication makes things worse. My goal is to reduce the external things that set off the mood symptoms (those being the most immediately crippling). I don’t take OTC stuff unless it’s necessary, since anything other than Tylenol and NSAIDs seems to affect me one way or another. My sleep schedule gets ridiculously regimented, because if I start cutting down or sleeping too much, things start to suck.
I’m at work right now, and my headspace is pretty bad; a good chunk of last night was spent hearing things that I don’t think were there. I’ll post more when I get home.
Kolga, thank you. I really couldn’t guess whether or not he’s experienced psychosis outside of manic/depressive episodes, it is so difficult to tell with him because he is always unstable. I can’t even recall a time he was lucid or didn’t believe in his paranoid delusions. Who is after him changes constantly, but it’s generally some institution of authority–more recently, The University of Michigan. Some days he accepts this as a casual fact of life, reporting his persecution nonchalantly. Other days they make him extremely agitated and he feels afraid or threatened. He does not consider himself mentally ill and is often angered by psychiatric intervention. Obviously some days he is calmer and more personable than other days. He gets very depressed and very anxious (during these times it is not uncommon to receive 15-20 phone calls from him in the middle of the night), but teasing out those mood features from the side-effects of his medication can be difficult.
I realize I’m biased, but I think he is about as crazy as crazy gets. I can’t even fathom how painful his life is. It kills me if I think about it too long.
I appreciate you discussing these difficult personal things in the interest of fighting ignorance. I don’t doubt for a second that you’re suffering greatly. I’m not a mental health expert, but I was under the impression that one common feature of schizophrenia is that the sufferer is absolutely convinced the delusions and hallucinations are real. From my perspective, the fact that you think something is wrong is a very good sign for you! My uncle has had this diagnosis for nearly 30 years and he is completely and utterly convinced that the problem is everyone else–the federal and local government conspiracies, the aliens, etc. Kolga, is that accurate, and if so, is the same true for schizoaffective disorder?
Oh, and Angel--tell your doctor immediately what is going on! If he or she doesn’t know, they can’t help!
My PCP already knows; he agrees that it’s probably just a reaction to the new medicine, which I’ve already stopped taking. The mood symptoms are the real issue. I’m waiting for it to cycle out of my system. I’m probably not as bad as I sound in my posts; I just tend to be melodramatic.
Think of it this way, have you ever worked at a place where everyone has got a cold at the same time.
Some of them get very sick, some only mildly sick. Some people deal with the symptoms better than others.
Why? They all have the same virus? Because everyone is different.
I may have a cold and because I have asthma the cold could be worse, same virus, different reactions.
Also some people respond better to meds than others. For instance, I suffered at one time from Panic Attacks. I took Paxil and it KILLED the attacks. I mean within 24 hours they were gone. Now it’s highly unlikely that Paxil will work that fast for others suffering from Panic disorders but for it works ASAP.
So not only are there degrees of an illness, each individual’s personality can help you cope with your illness.
Due to the massive amount of instability that your uncle has portrayed for such a long time, I wouldn’t be surprised at finding out that the diagnosis is unstable as well. About 15% of people with severe Schizophrenia don’t respond well to any treatment at all, and that’s about the same percentage for people with severe Schizoaffective Disorder as well. If there truly has never been a time when he was asymptomatic since the onset of the disorder, the diagnostic category lines are going to be even more blurry than usual.
I’m sorry, it really does sound like a horrible situation. My clinical and research experience was with adults with severe and persistent mental illness, and I did have clients who were at the same level as your uncle. It’s devastating, both as a family member and as a clinician, to watch this process. Have you looked into support groups in your area? NAMI runs some very good ones.
Yes and no. Certainly a lack of insight into the disease process is very common in the psychotic disorders (whether “pure” Schizophrenia, or Mood Disorder with Psychotic Features, or Schizoaffective Disorder), but it’s not unheard of. Generally, the lack of insight is most common when the person is in an actual florid episode of psychosis, but sometimes, when the symptoms begin to remit, the insight can be gained (or returns, if they had it before). However, in cases like your uncle’s, it doesn’t sound like he’s ever had any insight, nor is ever asymptomatic enough to recognize the difference.
I hope my responses aren’t creating more pain for you with regard to this issue.
No, on the contrary, they’ve been very helpful. I think there may have been times in his earlier life when my uncle was more lucid, but that was before I was born/when I was very young. We have done some work with NAMI, sort of. Well, my mother and my husband have both participated in FEST (Family Education Support and Training) through NAMI and I’ve attended a few meetings.
Problem is, my Mom is mentally ill herself (undiagnosed and unaware), which created some conflict with the facilitators of the program. She was really adamant about pushing her own agenda, which was validating her belief that my uncle is morally flawed. I have read that family support is incredibly important for sufferers of these disorders and typically a lack of family support affects treatment outcome negatively. Unfortunately, my uncle’s support has been sporadic at best. A lot of family members personalize his illness, meaning they attribute symptoms of his illness to his character. They identify him as lazy and manipulative. My Mom does this especially, losing him as a brother was very traumatic for her and I think it helps her create emotional distance. He also has resisted intervention by lying to his caseworkers about his family and saying we have nothing to do with him and provide no financial support, which is untrue. It is kind of a big mess.
Anyway, I accepted his illness a long time ago, I just try to let it motivate me to make a difference in mental health advocacy. I also live in another state, so what I can actually do to help is now limited. I can never really forget about him though. I appreciate your information. I guess he is just on the extreme end of the spectrum.
I was thinking along the lines of Markxxx. Different people, same disease, differing severity. I’ve known Type II diabetics who were well-controlled with just watching what they ate, exercising, and maybe occasional oral medication, and I’ve known ones on the other end of the spectrum who needed multiple injections of insulin per day. It’s all very individual. If humans (well, mammals, really) weren’t so individualized, our ‘hospitals’ could be very much like the auto repair shop we take our car to when it’s malfunctioning.
Having watched my mother suffer through mental illness for years, I understand how painful it can and must be to watch someone you love and care about suffer, and inflict suffering on those around them. I commend you for your compassion for your uncle, and send only the very best vibes your way!
I think a lot depends upon Nurture too. I have a friend with Schizophrenia, her voices tell her that she is beautiful beloved child of God. If you started in a positive and stable place, then the road will be smoother.
It sounds like your Mother and your Uncle experienced a lot of blame-oriented thinking growing up, and that usually correlates to a very dysfunctional environment. I’m also going to guess that there was a tyrant in their household, though I’m further out on the limb now.
Anyway, I’m sorry for what your Uncle is going through, and I know how hard it is to watch. My sense is that if you want to have a positive impact he best thing you could do is stay in touch with his Doctor; make sure someone stable and solution-oriented is tracking his care.
Also, helping arrange convenient, nutritious food, like one of those meal-delivery services, or even a fruit/vegetable of the month type gift would help. Malnutrition is a serious problem among the mentally ill, and greatly exacerbates the problem.
I have to agree with what Markxxx and everyone’s said; a lot of it would have to depend on individual severity. I can function, albeit not at the level that I could otherwise. I have friends with Bipolar (I and II) that absolutely cannot work. I have a friend who is probably wired very similarly to the way that I am, except that he hallucinates a hell of a lot more frequently; conversely, I have worse mood symptoms. The entire thing’s sometimes regarded as being on a continuum with scizophrenia and mood disorders anyway, so that’s not terribly surprising.
I can imagine that if you took my symptoms and ramped them up, they’d be absolutely debilitating. As it is, I get by; I doubt that anyone except for one or two people really know the extent of my screwed-uppedness.
This would be an understatement. I could write a book about how messed up my family is and always has been from generation to generation, but this is GQ so we’ll leave it at that.
These are good suggestions. One thing about my uncle is he is so appreciative of any attention you give him. I could write him a letter and it would make his whole month. So I really should just make that extra effort to connect. We used to be close when I was growing up. We wrote poetry to one another. He doesn’t attend family events anymore, so he missed my wedding, but he wrote me a wedding poem. I really love him.
I was given the wrong medication once because of the wrong diagnosis. I went from mild depression to a state of psychosis. It lasted for only a day or so, but it was the most painful time I have spent in my life.
I am so grateful that you are a loving person in this man’s life. You can’t imagine how much difference that can make. Just human contact and touch. He knows he is loved.
