This Is What It's Like To Live With Schizophrenia
Three people with schizophrenia share their stories.
Schizophrenia is a chronic and disabling — but treatable — brain disorder affecting more than 21 million people worldwide. Of those people, only half receive treatment. Symptoms, which usually begin between ages 16 and 30, primarily include hallucinations and delusions, but access to therapy, medication, and effective support systems allows people with schizophrenia to successfully manage those symptoms. Still, misconceptions — like the belief that schizophrenia makes people inherently violent (it doesn't) — persist.
Mental illness looks different for every person who experiences it. Below are three honest accounts from people who live with schizophrenia — what it's actually like, how it affects their lives, and what they wish people understood about it.
Ashley Smith, 29, Certified Peer Counselor in Atlanta
Can you tell me about when you were diagnosed? What led to it?
Ashley Smith: I was 20, and I had a psychotic break — hallucinations, paranoia, everything but sanity. I ended up on a high-speed chase with the police because I thought everyone was against me. I thought everyone was demonic, and I thought I could protect and save myself if I kept driving. It wasn't a plan, or anything like that. I just happened to see a pickup truck in the airport parking lot — I was trying to get back home because I dropped out of college and I relocated to California to be with family — and I ended up jailed for two months, hospitalized for three, because I failed the competency test, which asked simple questions like who's the president, what's the date. I couldn't answer.
Had you ever experienced anything like this growing up?
AS: No, this was all shocking to me and my family. I had never been arrested or jailed or even hospitalized for something that serious.
What happened once you got in the hospital?
AS: I became catatonic. I wouldn't move — literally sitting in my chair, or laying in my bed for hours at a time, days on end, and I lost a lot of weight. I was under 100 pounds at one time. They had to keep me hydrated via IV; they gave me protein shakes to drink to gain my weight back. It was a process. I was in group therapy but didn't really participate because I thought it was beneath me, and then I realized I had this diagnosis, and that I needed to be there.
Was it hard coming to terms with your diagnosis?
AS: Yeah, but there's no way around it. No one could lie to me; I was in jail. So that was a hardcore lesson learned — but it actually turned out to be a miracle in the long run, because at least I didn't do anything else with the law. At least it happened sooner rather than later. I could've had a family, gotten married, and then have this hiccup. Instead it turned out to be my new career, being a peer counselor, certified peer specialist (CPS).
Tell me about that.
AS: I was certified in 2012, but I've actually been a peer counselor since 2009 because I started doing NAMI groups in the community, and also my own support group, which I started with the support of my therapist. I learned how to manage groups with her; she helped guide me into my CPS position by giving me the application, and by helping me, and started that in 2009.
How did you start?
AS: After I was diagnosed, I got my sentencing reduced from a felony to a misdemeanor, because of my diagnosis of schizophrenia, and because I had a clean criminal record and good references from my church family and my family. My social worker in jail referred me to an outpatient program that offered housing, so I was there for almost a year, probably about seven or eight months, but when I went back to Atlanta — my family is in California, but I was raised in Atlanta — I was really isolated. I had disability income but no health insurance, and no program to attend. So I actually pushed myself out of my comfort zone to go to seek group therapy and that worked in the long run for me. I had thoughts of depression but I learned a lot of coping skills. Having this diagnosis, as well as the privilege and opportunity to work in this sort of recovery, is actually very enlightening and supportive and healthy. I'm able to share my experiences with clients, or peers, rather. And then we're able to connect and to have a sense of hope, and have that understanding of what we're capable of, you know?
Do symptoms still arise for you?
AS: I have depressive symptoms, but my schizophrenia is in remission. I haven't hallucinated or been delusional since 2007. I've been on antipsychotics that help me maintain and manage my symptoms. My biggest struggle today is my depression, but I'm doing so well with my coping skills that I'm no longer taking my antidepressants. But I will fall back on them if I need to in the future.
What sort of coping skills do you use?
AS: It's a ritual, almost. I create thoughts for the day, or affirmations. I think about my mom, I talk to my mom, who passed from breast cancer a couple years back. She was my biggest cheerleader, my biggest support with my diagnosis and what I was trying to do in the community, and in life. I journal, which is one of the best coping mechanisms for me — it really does work to vent, to release that negative self-talk. During the day, if I feel my energy about to drop, I take a walk around my agency building, and I just get some fresh air and feel the weather on my skin. It isn't a cure-all or anything, but it helps me in that moment of anxiety and depression. I definitely talk to my friends and family who know about my diagnosis, like recovery partnerships, peers.
They don't know what recovery looks like, or that recovery is even possible with schizophrenia.
Have friends and family been supportive?
AS: Oh very much so. In the beginning, my family and friends did not understand what schizophrenia was, and we're still learning together, but I have a lot of support. My family is actually back in California. I live in Atlanta by myself, which shows the support that I have here in Atlanta through my colleagues and other peer counselors.
You're obviously really open about this—
AS: Oh, yeah, it's my job.
Do you find people are surprised to hear you have schizophrenia when they find out? Do you still encounter stigma?
AS: Stigma is kind of limited because of the environment I place myself in; I'm very much involved in the recovery community here in Atlanta, so I don't experience a lot of stigma, but it doesn't mean it's not there. I definitely have encountered it, especially in regular settings, like in housing — when I've had to apply for housing here in Atlanta and back in California.
How did the people you were applying to know your diagnosis?
AS: Because of my income. They asked me my source of income, and I'd say social security disability, supplemental security income, and they'd ask why — which they're not supposed to ask, but they do. I was very naive and I told them my diagnosis and then they started to talk me out of it, and ask me these questions, implying I'm not well, because they don't know what recovery looks like, or that recovery is even possible with schizophrenia. A lot of people still don't know, which is very disheartening.
What's something you wish more people understood about schizophrenia?
AS: I wish that people would have a more open mind to the fact that people with mental illness — any mental illness — can and do get better, with proper treatment, adequate support systems, and access to care. And because of my experience, I can say there's hope for everyone within this diagnosis. I was so far gone — I was catatonic; I was not in reality — and now, I'm a single parent. My son's about to be 4. I live in a tenement; I rent a house. I work full time. I have a book out; I self-published it last year, and now it's used at conferences for recovery, and it's in every jail or prison in Georgia. I manage my depression with daily coping mechanisms and partnerships with my friends who are also recovering. I do things in the community, which I enjoy and love. I'm living my life.
Michelle Hammer, 27, graphic designer and entrepreneur in New York
When were you diagnosed?
Michelle Hammer: I was diagnosed schizophrenic at 22, but I was diagnosed as bipolar when I was 18 or 19, in college. I was living with some roommates at the time and, after college, when I was living with the same people, I told them, “Hey, so they found out I’m actually schizophrenic,” and they were like, “Oh, that’s what we always thought you had.” So it was kind of like I was the last person to know.
How did you handle being diagnosed?
MH: I was upset for a bit, but what are you going to do? It’s not going to go away, so why be depressed about it? Why not turn it into something good? Which is what I’m trying to do with [clothing line and advocacy organization] Schizophrenic NYC.
How does schizophrenia manifest for you?
MH: For me, I kind of zone out, daydream, and what looks to other people like talking to myself. But really, it’s a very vivid daydream. As long as I know what’s real and what’s fake, I know I’m OK.
Do you feel like you are able to tell the difference between what’s real and what’s fake?
MH: Yes. I hope so!
How has schizophrenia affected your relationships? Is your family supportive?
MH: No one’s really said anything too bad to me. Most people have been supportive. When I was diagnosed, my mom gave everybody a book about schizophrenia to read but with a generic book cover on it, so no one knew what they were reading. But then there are people who thought it meant I was batshit crazy.
Have you come up against the stigma, either about schizophrenia specifically or mental illness in general?
MH: I meet a lot of people with my pop-up shops, so I hear a lot of stories about people’s friends, family, acquaintances. Sometimes I just like to hear the stupid things people say.
MH: I was talking with one woman for a while and I asked her, “Have you ever met a person with schizophrenia?” and she said, “No, and I never want to.” And I didn’t tell her, you are right now! But yeah, I hear a lot of stupid things.
I asked her, “Have you ever met a person with schizophrenia?” and she said, “No, and I never want to.” I didn't tell her: You are right now!
What’s your treatment been like?
MH: Well, I go to a psychiatrist every other week, and, like I said, my friends and family help, but really my treatment is just taking my medications.
Were you resistant to medication at first?
MH: Oh yeah. Absolutely. When I was 19, I took something that made me horribly angry, miserable. But I was just taking the wrong thing. It’s hard to find the right one, and it’s a long process, because you take one thing for one problem, and then another thing for the side effect from that one, and then another one…
Do you feel like you’ve found the right mix?
MH: Oh, definitely. Definitely. Without these medications, I’d be living on disability, in some halfway house. I’d never be able to function, have a job, not even for one day.
Can you tell me more about Schizophrenic NYC, why you were inspired to launch it?
MH: I wanted to spread awareness about the mentally ill homeless. I was on the subway one night, and I saw a homeless man who was clearly schizophrenic — zoned out, talking to himself, had no idea what was real and what wasn’t. And I realized — I know that if I didn’t have my family, my friends, my doctor, I could be that. I could so easily be homeless. It’s about getting that support.
When did you start?
MH: I started in May 2015, after I was fired from my seventh job — you know, I was curious so I counted it up recently, and it’s seven jobs I’ve been fired from since my diagnosis.
Do you think there’s a correlation there?
MH: I think schizophrenia definitely affects the way I can work. I feel like I don’t have that normal mindset — waking up, getting to work on time, sitting at a desk, leaving at the same time every day. It’s not my kind of work flow, not my situation. It wasn’t very creative. I’ve realized the best thing is for me to be my own boss, so I wanted to start my own business. But I do have a new job, too, a graphic design job.
So you're doing that on top of the shop? That’s probably a heavy workload.
MH: It is, but I like it! I love the pop-ups; it’s fun. I get to chitchat with a lot of people. Right now, I’m running the business by myself. People ask me where I’m based, do I have internships, but really, it’s just me — for now. I have plans to expand.
What’s something you wish more people understood about schizophrenia?
MH: They don’t realize how common it is, how many people with schizophrenia are walking around them. Nobody that I currently work with knows I’m schizophrenic. I don’t tell anyone, because of the stigma. It’s funny, my whole life people have told me I’m weird. Now, when I tell them I’m schizophrenic, they say, “But you’re so normal!”
Daniel, 19, college student in Ohio
How old were you when you were diagnosed?
Daniel: Around 7 to 10 years old.
How did you handle receiving the diagnosis?
D: I didn't realize understand what it meant, though when I looked into it more in my teen years I began to privately embrace it. I've only been open about my schizophrenia for the past few years.
How does schizophrenia manifest for you?
D: Well, when I was younger it was especially bad — auditory and physical hallucinations, and states of dissociation. Nowadays, I've been coping with it, and the hallucinations aren't so often. A lot of my symptoms recently have been states of delusional thinking or dissociation. For example, I might have a delusion of grandiosity or power that isn't really there.
Can you tell me more about that? What might happen when you have a delusion of grandiosity?
D: Nothing too bad, I'll just somehow convince myself that I am somehow above others around me, that I'm worth more than others. Some people with that delusion may even convince themselves they're a god, or some other divine being.
How has schizophrenia affected your relationships, if at all?
D: Maintaining friendships can be very complicated, and romantic relationships even harder. Since I'm quite emotionally detached, maintaining a romantic relationship with someone who doesn't quite understand me can be hard. They tend to think I don't care enough about them, when I just have a hard time showing that affection. I don't talk much, and when I do I tend to be very repetitive with my words; I keep to myself, so others may become distant because of that. I'm very detached from others around me, even my own family. Most of my family will hug or nudge each other around playfully — they have this sort of physical connection with each other. I do not. I don't really hug my family. I don't even touch them; I just don't feel that connection.
Has your family been supportive?
D: Family has been as supportive as they can be. If I have a breakdown, I tend to retract, keeping to myself, or my friends. Schizophrenia runs through one side of my family, so they have a decent understanding of my situation.
More than anything, being understood is what I long for.
Are you in school, or working?
D: I am both a college student and have a part-time job at a pizza chain.
How does schizophrenia affect that?
D: It can add extra stress onto school and work, though I've learned when to pull back so I won't overwork myself. Since I've had it my whole life, I'm very aware of what I can and can't do.
What's your treatment been like?
D: I don't believe in or agree with the medication used for schizophrenia; I think it more so dulls your emotions. So, much of my treatment has been coping with my symptoms, and finding those who are understanding and trustworthy enough for me to talk to.
Did you have a bad experience with medication?
D: Not me personally, but with others I have met. I understand medication being used in extreme cases, but for many, it isn't necessary, in my opinion. I disagree with much of the medicinal practice — again not based on experience, rather research.
Do you often encounter stigma?
D: Yes. When I open up about having schizophrenia, people often think about school shooters or "psycho murderers" you'll see in movies and books. There is a lot of social stigma surrounding schizophrenia, that we're all "crazy," or that we're harmful in general. Many times, schizophrenia itself will be used as the antagonist in horror stories or movies, and it's been used so often as a trope that schizophrenic patients start to become demonized for it.
What's something you wish more people understood about schizophrenia?
D: I wish people understood we are not like you see in the movies. We are real people, with real emotions, and a real desire and need to be understood. More than anything, being understood is what I long for.
All week long, we're talking about mental health. If you enjoyed this post, you might also like these: