Since I have SZA and possess more empathy in some contexts and less so in others, I have a more nuanced view and have hypotheses on caregivers’ observations and can offer possible explanations and clarifications on empathy and SZ/SZA.
First, I’d consider observations of capacity for empathy prior to the onset of the illness. Certainly if a person had little expressed empathy prior to illness, I wouldn’t expect much improvement. I don’t believe there’s a correlation between lack of empathy and developing SZ, but my experience is people with SZ/SZA tend toward introversion often intensified by the disease—at least those with paranoia such as myself—and as such may be reticent to act on or express feelings of empathy. I wouldn’t assume empathy is completely absent. I’ll offer various reasons why this may be the case.
Empathy is in large part a learned social response to shared experience. In a typical prodrome, a person with SZ/SZA will withdraw from society, often reactively to avoid overstimulation, but also defensively as you start to feel misunderstood and devalued by society. This alienation robs you of experiences and resultant emotions at thresholds of adulthood. And it can handicap you of relating to others due to a simple lack of a shared context. Couple this with impaired social skills and avolition and in many contexts you have trouble relating or expressing emotion.
For example my first ‘date’ was in my late-mid 20’s, my first ‘career’ job was the year before and my first ‘relationship’ was ten years later. I’ve never married nor had children. If I didn’t have work or theatre and other hobbies, I’d have little shared experiences to empathize with most people. And I’m a near best-case scenario. My brother speaks almost entirely about his past prior to developing bipolar disorder, or engages in fabrications and delusions—his empathy and social development is noticeably stunted as a result.
This situation only gets worse when hallucinations and thought disorders and delusions take hold. You perceive the world differently, and find it harder and harder to relate to others, because they do not share the same experiences of reality. Furthermore, caregivers and the rest of the society often invalidate and contradict resultant aberrant thoughts and feelings which are quite real to the sufferer. And unless caregivers practice LEAP methods, they can be guilty of a similar “lack of empathy” from the sufferer’s perspective. In many ways it’s harder for caregivers to relate/empathize, because they haven’t experienced these thoughts and feelings, while the sufferer typically remembers shared “normal” experiences before onset of their illness. Hallucinations and delusionary thinking can be quite complex, individualistic and difficult to explain. This is especially true when paranoid delusional systems are in play. It can take hours and hours or days of exposition to fully explain their world view and often a rational person still doesn’t ‘get’ thought processes that are alien to them. I sometimes tell people when explaining delusions, “you had to be there”, knowing full well they couldn’t possibly understand. It’s a little “meta” joke I tell myself.
Caregivers are often told to take care of themselves first using the metaphor of putting on their oxygen masks first before assisting others. Please remember, people with SZ/SZA are those others. They may have trouble breathing from their metaphorical oxygen on good days, much less when the cabin pressure is low. They may be preoccupied with the flashing lights or whistling wind from the gaping hole in the plane or numbing paralysis of fear that the plane is about to crash or many voices shouting that “we’re all going to die!” And the hypoxia from lack of oxygen is dulling their cognition, so maybe you should forgive them if they leave their luggage behind in the aisle when they rush to slide down the chute of their imaginary crash-landed plane. I’m being melodramatic here to make a point: you’re the one breathing oxygen here, your brain is functioning, yet you’re asking the person you are assisting to think about other people when by definition you consider them impaired.
Schizophrenia is a disorder of thought AND emotion. Most people forget this and focus on the thought disorders and resultant behaviors. Look up the definition to refresh your understanding if you’re unaware of this. The ‘split’ is between thought and emotion-- not 'personality’. Anti psychotic drugs work largely on the thought side of matters or “positive” symptoms, and less so on “negative” symptoms. And what are those negative symptoms that those drugs don’t work well on?: poverty of speech, flat affect, lack of friending skills and socialization and avolition. These all have to do with expressing and acting on emotions, so to me it’s small wonder there’d be a perception of a lack of empathy.
In my experience, negative symptoms are the last to leave— if at all. In my case I had about a decade of talk therapy, voice lessons and acting experience to tackle mine— most people aren’t nearly so lucky aside from the few who convince a doctor to prescribe Clozapine. For me that split between thought and emotion was very real and palpable, and I was acutely aware of it because of insight. It cost me those ten years between a first date and a ‘real’ relationship.
Endless practice in gradually more challenging roles got me out of my head to stop ‘performing’ my emotions and instead ‘acting’ on them— in-the-moment — as actors say. Voice helped me focus on presentation and affect. But make no mistake, before my training, I had emotions and empathy, often strong and overpowering. They came out alone in my apartment after I thought about events that I appeared numb to in-the-moment. Maybe I didn’t fully understand what was going on until I thought about event, or talked to my therapist, or listened to music or watched a movie or read something that helped me relate, and gradually the lag between thought and emotion lessened as I grew to experience new things and was better able to relate to others. Yet through through the veil of stigma it was often impossible for them to relate to my experience.
So as @oldladyblue implies, have patience. Empathy is a tough nut. It can take years or a lifetime to emerge. This is very much a marathon, not a sprint. And we with with SZ/SZA always feel behind, bringing in the rear. Hoping they don’t shut down the race before we get to the finish line.
Disclaimer: While I am a part-time caregiver of my brother and father with SMI, I was diagnosed with SZA over thirty years ago. I’m an advocate of appropriate drug treatments for SMI, but I feel they are incomplete treatments and additional CBT, supportive talk and psychosocial therapies are helpful where feasible. Any drug advice is from personal experience or research and not a substitute for qualified Psychiatric care.