Connected by Schizophrenia

What’s one thing you wish people understood about schizophrenia?

Rachel Star Withers: The majority of the time, life is actually just super boring. People hear the word “schizophrenia,” and they think, “Oh my God. It must be like living in a constant nightmare.”

While I experience hallucinations probably about 90% of the time, it’s mostly mundane stuff. I might look at people and see their faces look a bit distorted. Or, I’ll look at some text, and the writing might be all mixed up. It’s usually so small that the people around me have no idea it’s even happening.

It’s not like scary creatures are leaping out at me every second; it’s just a part of my everyday life. .

While people always think of the dramatic stuff, like hallucinations and delusions, one of the biggest symptoms that has primarily held me back over the years is confusion and the trouble thinking clearly.

For example, in college, I would get so lost in the hallways that I couldn’t even find my room number. I still can’t take jobs that handle money because my counting gets all twisted.

Sometimes it’s those little, constant things — rather than the big, cinematic moments — that make schizophrenia hard.

Kody Green: I wish people understood that we’re capable of moving past our diagnosis and living full, functional lives.

There are so many misconceptions around schizophrenia; although it’s an incredibly difficult illness to live with, many people just assume that everyone living with it eventually ends up in prison or a psychiatric facility.

People often doubt that I even have the condition simply because I have a family, travel, and do the same things others do. They assume that there’s no way I could have this diagnosis and still be successful.

That shows how little people understand about how far treatment for schizophrenia has come, and what it’s actually like to live with the condition versus how it’s portrayed on TV and in movies.

Michelle Hammer: Schizophrenia is a spectrum illness. When people hear the word “schizophrenia,” they often think it’s horrible, scary, and violent — a terrible and awful thing that nobody could ever recover from. They think you’re basically “done,” when the reality is you can have schizophrenia and live a well-managed, healthy life.

It’s just an illness, a label; it doesn’t mean your life is over. In many ways, getting the diagnosis is a good thing because it means you’re finally being treated for the right condition.

I was originally diagnosed with bipolar at 18, but looking back, it was obvious that wasn’t the right fit. It was self-stigma that kept me from it. I was telling myself I didn’t want a schizophrenia diagnosis because I thought it was a “bad” thing to have.

But you want to be treated for the right condition; that’s how you get better.

You don’t change just because you’ve got a label on paper. You’re the same person you were before, and if anything, you can only become a better version of yourself because the right diagnosis leads to the right medication.

You can be a completely regular person who contributes to society in a great way and still have schizophrenia.

What symptoms have been hardest to explain to others, and what helped you finally put them into words?

Rachel: I think hallucinations are the hardest to explain. I have audio, touch, and visual hallucinations, like ticking or scratching noises that drive me restless. It’s so real that I can tell you exactly where it is — like it’s inside the wall to the left or a shadow creature standing behind me to the right.

One of my most common hallucinations sounds like someone left a radio on in the next room, caught between channels. These are the things I’m hit with all day, every day, but I’ve learned to just ignore them. You eventually get used to it.

That’s actually the hardest part to communicate, even with doctors. You go in and tell them you’re hallucinating, and they often freak out and want to give you all these meds to make them go away. At some point, you have to explain that a lot of them don’t even bother you anymore. They were scary when I was younger, but not so much now.

Kody: It’s complicated. I think delusions are incredibly difficult to explain, but negative and cognitive symptoms are just as hard because people simply don’t know much about them.

The trouble with delusions is that most people don’t understand how much your brain can force you to believe something. When I talk about them, I’ve actually had people ask, “Well, why wouldn’t you be able to figure out that this isn’t real?” Or they tell me, “That makes absolutely no sense.”

My response is usually, “Yeah, well, that’s how it works.” My brain is convincing me of the complete opposite of reality, and a lot of people can’t fathom that because they’ve always been able to trust their own minds.

It’s really hard to explain how that feels, especially once you start medication and begin to see things more clearly. Looking back, it can even seem “silly” that you ever believed those things, but that’s why it’s so hard to describe — people just can’t relate.

You can explain things like memory issues or trouble taking care of yourself, because it’s like fatigue or similar issues that often come with other illnesses. But it’s really hard to explain delusions.

Michelle: The symptoms that are hard to explain to others are the hallucinations and the delusions. People will say, ”Don’t you realize that person shouldn’t be in your living room? Why are you talking to them?” And my answer is always: “If I knew they shouldn’t be there, I wouldn’t have schizophrenia.”

With delusions, people often think you’re just “making things up.” Then they start to disbelieve everything you say. Even when you’re telling the truth about something unrelated, people don’t believe you. It’s incredibly frustrating.

How important is it to have support, and where do you turn to for it? 

Rachel: I’m very lucky to live with my parents because I can’t live alone. I’ve tried in the past, and I’ll do well for about two weeks, but then things start to get “weird.” There’s a part of schizophrenia where you tend to cut yourself off from reality and from people, retreating inside yourself for whatever reason. For me, two weeks is the limit before that withdrawal starts to take over.

My dad is great at checking on me. If he hasn’t seen me all day, he’ll come down to my space just to say, “Hey Rachel, have you eaten today? Come upstairs, have some food.” It’s like I just need someone watching over me.

I’m very blessed that my parents have been such an incredible, consistent support system throughout the years. They’ve put up with a lot, and it’s really just down to luck that I have them; I know I wouldn’t be doing as well as I am today if I didn’t.

Kody: I’ve been privileged to have support from not just my friends and family, but also from peer groups. I believe that a combination of peer and family support is largely what helped me reach this level of stability. [Kody referenced NAMI.org as a place to find mental health support.]

While I think medication is an important thing, we often look at it as a cure-all and forget that people need help outside of that. So many people miss out on additional support because, for whatever reason, we don’t see a need to look past the prescription.

I think peer support helped me find stability, learn more about my diagnosis and coping mechanisms, and it also helped me recognize that I wasn’t alone. It helped me to see other people out there who were not only having trouble but were actively learning to live full lives despite this illness.

I can’t ever say enough about peer and family support, especially because so many people aren’t lucky enough to have it — a reality I see all too often when I talk with other patients.

Michelle: It’s incredibly important to have support. My entire advocacy journey started with a moment on the subway when I saw an unhoused man talking to himself with the exact same mannerisms I use when I talk to myself. I thought: What’s the difference between this guy and me?

I realized that without the support of my family, friends, and doctor, I could easily be in his position. It’s a strange thing to say that I’m a “lucky” person with schizophrenia, but I am. That realization is exactly when I decided to be an advocate for change.

The support of my family and my parents, along with my doctor managing my medication, is what makes my life possible. I know I wouldn’t be able to manage on my own; I simply wouldn’t be able to live the life I live today without the support of the people around me.

What’s one small action people can take to help people living with schizophrenia?

Rachel: We’re “normal,” so just treat us that way.

I’m really good at telling people I have schizophrenia. In whatever way you tell someone something, your emotions when you tell them will determine how they react. If I’m nervous or freaked out about it, they’ll act nervous and freaked out in return.

I just say it very casually: “Oh yeah, by the way, I have schizophrenia. It’s a mental disorder.” When I rattle it off like that, people usually respond calmly with, “Oh, OK.” It’s taken me a long time to get there.

In the past, when I didn’t have that confidence, people would freak out when I told them. So I think it’s important to learn how to respond to things like that.

Sharing a diagnosis is a lot like “coming out” — it’s intense, it’s hard, and there’s real fear that the person will see you differently. I’ve lost friends who no longer felt comfortable around me, and living in the Bible belt, I’ve even been told I was demon-possessed many times.

If someone tells you something like that, take a second before you react. Even well-meaning reactions like, “Oh my God, I had no idea!” can be difficult for someone who is just starting to talk about their diagnosis.

If someone tells you they have a condition like schizophrenia, you don’t have to say anything. You can just accept what they’re saying. If they want to tell you more, they will; otherwise, just appreciate that they wanted you to know.

Kody: Educate yourself about the diagnosis and then share that knowledge with others. Because of the cognitive issues that can come with schizophrenia, many people living with the condition aren’t often able to have these conversations or communicate their needs effectively.

That’s exactly why I feel so strongly about being an advocate for schizophrenia, and in this space, we’re severely outnumbered. We’re constantly fighting a stream of misinformation and misunderstanding online and in the media, and a handful of advocates simply can’t keep up.

We need to rely on people outside of our community to help educate the public and help people recognize that this diagnosis isn’t just what you see on TV or in movies. It’s a real condition that affects people in a variety of ways.

The most effective tools to help people better understand this condition are communication and education. When others take the initiative to learn the facts, it relieves us of the burden. It allows us to navigate our lives without the added weight of having to explain our diagnosis to every single person we meet.

Michelle: Just be friendly, nice, patient, and welcoming. Don’t treat people like they’re not as good as you; instead, recognize that they’ve overcome something significant. Everybody is the same in that way — we all have our own differences.

I often joke that I’ve met people who have no diagnosis a all who are way “crazier” than me. I’m just me. Having a diagnosis doesn’t change who I am or make me “not me.” I am who I am — like me or not, but I don’t think that has anything to do with my schizophrenia.

How do you practice self-care?

Rachel: I love martial arts, and I do a lot of boxing. I’m terrible at it, but I enjoy it. A big part of my life is getting outside of the house and doing things that have nothing to do with my mental health. For that hour or so, I’m not thinking about my condition at all.

It’s a chance to just “cut off my brain” and focus on learning new skills and moving my body. It’s funny because I can even hallucinate while I’m in the gym, but because I’m so focused on the exercise, everything else just kind of fades away.

Kody: I rely a lot on simply taking time off. Early on in my advocacy, I recognized that I can’t post every single day like most content creators do. I even had to stop looking at my comment section because the feedback can heavily affect how I react to different things and what’s going on in my brain.

Even though my livelihood depends on me being an advocate and talking with people, I have to be willing to take time away.

I have to prioritize my health and make sure I’m taken care of first.

When I’m offline, I play video games or try to spend as much time as possible outside, especially when it’s not winter here in Wisconsin. Spending quality time with friends and family has been a huge way for me to relax and find the energy and stamina I need to continue doing things.

Michelle: I love my little dog so much. No matter what’s happening, my dog just loves me all the time. Hanging out with my dog is a huge part of my self-care. I also try to clean things around the house. Just putting my life in order in some way is really helpful.

Is there anything else you’d like people to know?

Rachel: I always want to stress to people who are like me — those living with schizophrenia or who are afraid they have it — that you’re not alone. There are so many of us out there.

When you first receive this diagnosis, it can be terrifying because you feel like you’re a “freak.” About 20 years ago, when I was first diagnosed, an online search for information would only turn up cold medical articles or One Flew Over the Cuckoo’s Nest.

But today, you can go on TikTok or Instagram and find entire communities of people from all over the world sharing their lives and stories. There are so many opportunities to connect with other people who know exactly what you’re going through.

Michelle: Don’t let the stigma from society get in the way of you living your best life. More importantly, don’t let self-stigma shame you into thinking that you can’t achieve your dreams.