5 of the Best Ways Anyone Has Helped In My Struggle With Schizoaffective Disorder

It’s “normal” to feel lost when it comes to how to help someone with schizoaffective disorder or schizophrenia. Even if you’re the person living with it, you may not always know what to ask for or even how to ask. But that’s OK. Unless you’ve been through this before, there’s no reason you would know what to do. And, while those of us living with psychosis may have some of the same or similar symptoms, these illnesses are highly personal and what works for one person may not work for another.

But, to help you come up with things that will help you or your loved one, in no particular order, here are five of the best things that anyone has ever done for me and my schizoaffective disorder.

1. Asked questions to realign me when I struggle to get my thoughts in order.

When I feel most overwhelmed by symptoms, I can’t always describe what I’m feeling. The words hanging at the tip of my tongue fall back into my throat. Thoughts may circle and chatter in my head, but a screen comes down, preventing access to my own thoughts. It’s distressing, it’s frustrating, and it’s out of my control.

When I begin to lose that connection, one thing others have done for me that has helped is to ask questions. Nothing open and sweeping, but specifics. Did you hear something? Are you scared? Do you need to go to the other room? Another option is to backpedal. When my thoughts derail during therapy, my doctor will walk us backward and repeat the things I said leading up to that moment. She doesn’t push me in any specific direction, just puts my feet back in the prints I’ve already made. Both of these methods help me slowly sort through my thoughts and can assist me in breaking down that barrier when I would otherwise become frustrated and only lock myself out of my mind further.

2. Offered support in a way that was unique to our relationship.

There was something special about two of my friends sharing a song they found with me. We were all music fans, but for them to hear this song, and not just think of me but think of how it would help me and make me feel, really meant something to me. At that point, I was only weeks into my schizoaffective diagnosis and none of us knew what to do. But they shared that song with me and I cried. Not just because the song was touching, but because, for us, music was like a native language. It was truly a way we communicated on a deep level. This song was them seeing me — seeing the pain I was in and offering support in one of the most profound ways they could.

3. Educated themselves about my schizoaffective disorder.

In most cases, the more someone understands my illness, the better they are able to support me. And because of that, one of the best things people have done for me is learn about what I’m going through. My boyfriend chose to take an online course about schizophrenia, and I joined him as well. My parents bought books that we combed through together. But I also encourage people to ask me any questions they may have. I’m typically happy to share my experiences, and knowing things that are specific to me and my life with schizoaffective disorder can also make understanding it easier and give you some advanced knowledge so that when things get tough, you already know some ways to help me or things to avoid doing or saying.

4. Gave me some level of control over my life.

I get it. Between anosognosia, delusions, and every other thing their brain may throw at them, you can’t always trust your loved one with psychosis to make decisions that are truly in their best interest. But, at least for me, having some semblance of control over my life is vital. The less control I have, the more I spiral downward into depression.

I was lucky to be given a great deal of control over the years. Decisions like whether to be admitted to the hospital or whether or to go on an independent study program, and even the decision of whether or not to move away for college were all up to me. But even if I couldn’t make that decision about whether or not to go to the hospital, being able to choose what I brought with me would still have been significant.

Having even small bits of control over my life is empowering in some ways. And at its most basic level it helps me feel like I still belong with everyone else. Taking away my choice makes me feel less human. There may be times where I need help like a child, but I still want to feel like I belong at the table with the adults.

5. Remained patient amid my struggle.

Schizophrenia and schizoaffective disorder will try your patience, whether you’re a parent, friend, significant other, or even the person living with it. I will trip over my words, struggle to understand and forget things countless times. I’m easily confused, easily distracted, and it’s easy for me to feel left behind. Please repeat yourself. Write things down for me, the more detail the better. Slow down when I ask and understand that I have to cut through a lot of pride and shame to get requests like that off my tongue sometimes. Schedule things. Remind me, even if you think you shouldn’t have to. When either you or I get frustrated, remember that my words and actions are influenced by this disease, and it’s not always personal. Quite possibly the best thing anyone has done for me is being patient.

Figuring out what helps you or your loved one can be a process.

Life with psychosis is complicated, but through trial and error, you will find things that help. Some may only help in certain circumstances, like allowing someone control over life decisions. Others may be specific to your relationship with that person, like my friends offering support through music. And still, others may be much easier said than done, like being patient. But one way or another, you’ll figure it out. There will always be bumps in the road and obstacles to scale. But finding methods of support that work for you can make it all a little bit easier.

Follow this journey on the author’s blog, Not Like The Others.