This post was sponsored by Teva Pharmaceutical Industries Ltd.
As a mother-daughter team, Sophie and Sally have shared highs, lows, and every emotion in between since Sally’s onset of schizoaffective disorder. They’ve learned along the way, working out their care partnership through trial and error as Sally’s condition ebbed and flowed.
The best information has come from Sally herself. No one is more of an expert on a disability than someone who lives with it, and as Sophie learned to trust her daughter’s perspective – even when it went against ‘expert’ advice – they gained the confidence and skills to navigate this confounding condition. In turn, Sally came to trust her mother to respect and advocate for her preferences and autonomy when needed. In fact, Sally credits her willingness to take her medication during her initial 10 months of psychosis to that shared trust.
Here are some shared beliefs and practices that guide them through challenging times.
Honor their reality
Sophie: When Sally first started experiencing psychosis, I thought it was my job to convince her of my reality. But it soon became obvious that my attempts were damaging her trust while doing nothing to change the course of her psychosis. So I changed tactics.
Instead of trying to prove to Sally that her beliefs were wrong, I learned to focus on her underlying emotions and address them without judgment. Without commenting on the delusions, I learned to say, “I can see you’re scared, and I want you to feel safe.”
Sally: It’s very tempting to challenge someone’s reality when you’re trying to get them to do something they don’t want to do – take their medication, do chores, or seek treatment. A tip I often share for these situations is to work within the logic of the delusion.
For example, when I was paranoid about showering due to my belief that there were cameras in the shower, my mom offered a sponge bath at the sink with my clothes on. This was a creative way to work within the context of my beliefs to meet her goals without contradicting me.
Don’t force outcomes
Sophie: I learned to separate my preferences from what was truly important. Sally’s safety came first, and then I focused on one or two things I cared most about – like knowing where she was late at night and keeping our shared space clutter-free. I let go of everything else: if Sally ate the same meal every night, was it really worth arguing over?
Sally: Autonomy is sacred to people with psychosis because it’s so often taken away from us. Even when it’s medically necessary, being involuntarily hospitalized, restrained, or sedated can be highly traumatic.
Rather than forcing outcomes, caregivers can restore our sense of autonomy by offering choices. For example, if you want your loved one’s help around the house, let them pick which chores they prefer. It will go a long way toward establishing and preserving trust.
Understand negative symptoms
Sophie: Early in Sally’s psychosis, I misunderstood her negative symptoms, such as social withdrawal and decreased emotional expression. I learned in a NAMI class that these symptoms weren’t signs of defiance or laziness – they were reflecting how schizoaffective disorder affects the brain . Once I accepted that Sally’s healing required rest and stillness, I came to see her exhaustion and lack of communication as evidence of the hard, internal work of recuperation.
Sally: This was an issue during conversations with doctors. When they asked about my mood, my mom often responded that I’d been irritable when I was actually experiencing negative symptoms that made me far less responsive to my surroundings. I was doing my best to show up, but my mom perceived hostility. After she learned to depersonalize my symptoms, our relationship became a lot stronger.
Respect health care trauma
Sophie: I didn’t understand the trauma of involuntary hospitalization until Sally’s experiences left lasting emotional scars. Once I learned to recognize dismissive attitudes, indifference, and poor conduct in health care settings, I was able to serve as a bridge between Sally and clinicians and staff if they lacked the training, experience, or willingness to create a healing atmosphere. When Sally tells me that something’s wrong, she trusts me to know her rights and make sure that the problem is addressed.
Sally: During early recovery, I received care at an early psychosis intervention program, and my mom and I would argue whenever I complained about my therapist. Now I understand that my mom insisted I remain in that program out of fear that I’d relapse without it. But as my mom educated herself about health care trauma, she started to recognize my therapist’s condescension, disengagement, and pessimism about my recovery. Knowing that my mom honors and respects my lived experience has increased my trust in her as an advocate.
Final thoughts
Sophie and Sally: Trust-based caregiving isn’t about perfection. Like any mother and daughter, we make mistakes, hurt each other’s feelings, and take each other for granted. But because we place such a high value on mutual trust, we work hard to understand and honor each other’s perspectives and make amends when our actions cause harm. When caregivers stop trying to manage their loved one’s illness and support the whole person instead, everything changes.
This blog was made possible through the support of Teva, whose dedication to empowering patient voices and fostering authentic connections within the community continues to inspire meaningful storytelling. By enabling our ambassadors to share their experiences, Teva reaffirms its commitment to listening, learning, and leading with compassion—ensuring that real stories remain at the heart of everything we do.
