How My Relationships with My Caregivers Has Helped Me Navigate Schizoaffective Disorder

I have had many positive influences in my life since my initial diagnosis of schizoaffective disorder. Mental health professionals and family members alike have played active roles in my continuing recovery. However, in some instances, it has taken time for a trusting relationship to form.

I have been treated by four or five practitioners since my diagnosis — but not every relationship with a caregiver is the same. Early on in my treatment, I felt no connection to my therapist. Over time, that changed as I found practitioners who understood and challenged me.

Developing Trust Through Consistency and Empathy

Creating a rapport doesn’t happen overnight; often, a healthy relationship with a therapist forms over time. Seeing the same therapist over a long period time on a regular schedule has been critical for me. Having routine visits for therapy, bloodwork and medication adjustments helps me to avoid the confusion and fear that can accompany my illness. I get regular appointment letters to remind me of the date and time of my next scheduled visit. This builds a strong foundation of trust, allowing me to accept help, follow advice and consistently care for myself.

Consistency is only one piece of the relationship. I need my caregivers to support and empathize with me, while challenging me to be the best version of myself. My current therapists give me positive support and answer all my questions. They truly listen to my concerns, and they are quick to offer advice when I ask for it. They also push me to be as independent as I can by keeping my appointments, taking my medication as prescribed and always “checking the evidence” when I hear sounds or voices that disrupt my thinking.

Receiving Unconditional Family Support

My parents have also been major caregivers in my life, especially in the beginning of my mental health journey. When I first received my diagnosis, they educated themselves about the condition. They accepted me and my illness. They have seen me at my worst, my best and everything in the middle — and they are not afraid of mental illness.

Their open and continued acceptance is the kind of example we need to fight the stigma attached to my diagnosis. They are always a phone call away, and I trust that I can contact them whenever I am questioning my symptoms or just need to talk. Moreover, they have challenged me to find my greater purpose. I am not a public speaker, but my parents have encouraged me to write about my feelings and experiences and to become a mental health advocate.

Naturally, this support also includes practical tasks. Since my dad serves as my fiduciary (he legally manages my money and assets), I do not have to be concerned about my finances. He keeps me informed about all transactions, but also allows me to be as financially independent as I can be. I am responsible for taking care of what I can take care of.

Lastly, my parents remind me of the balance I need and deserve; they encourage me not to live a solitary life but respect my boundaries when I need time alone.

Advice for Others

I have come to understand that my relationship with my caregivers must be built on honesty on both sides. Just as I expect my caregivers to be straightforward with me, I have to be honest about whether I am taking my medication as directed and the specifics of my symptoms. If I’m not honest, it will strain the relationship; moreover, it will work against me and my health.

For those who do not feel that they have supportive relationships with their caregivers, I would encourage you to write down your expectations — of them and of yourself — and discuss them openly with the people in your lives. A good caregiver will keep you from slipping through the cracks of a difficult system, so don’t give up in your search until you find that person, or people, who can help you.

I also want to stress the value of community and knowledge when searching for the right caregivers and support network. I would advise using NAMI’s online tools as an educational resource, and I would strongly encourage people to attend NAMI-sponsored events. This will bring more positive relationships into your life. Some of the people you meet may have helpful guidance or even become great friends.

No one can — or has to — go through their recovery journey alone. I have learned that lesson. Maintaining good relationships with my caregivers is a vital part of being a mentally healthy adult.

Jason Jepson began his mental health advocacy with NAMI, where he received peer-to-peer certification. He has since gone on to volunteer helping veterans who have mental health issues and to write two books.

A version of this article appeared in “Schizophrenia Bulletin,” Volume 44, Issue 6, November 2018, Page 1172. It has been edited and republished with permission.