Category: Schizophrenia

In our world of smartphones and social media, giving others our time and undivided attention is often the most valuable and precious gift we can give. The gift of time and companionship can mean even more to people with schizophrenia, who may be socially isolated or have social anxiety. Both of these symptoms mean that they may spend much of their time alone.

Here are some gifts that will benefit the person on your list with schizophrenia symptoms without breaking the bank.

Offer to take them to a museum.
Plan a lunch date.
Get them a gift card to a coffee shop (a chance to spend time with other people in a public place).
Plan a hike or picnic.
Plan a fun night out, with popcorn, soda, candy, and their favorite movie(s).
Plan to explore a new part of your city or town by bike or walking.
Pay them to take a class at a local community college or even online.
People may feel uncomfortable around someone with schizophrenia. Letting someone with schizophrenia know that they are a desirable friend and a valuable part of a larger community can be a gift enough. It can be given without money or special plans.

How to Treat Someone with Schizophrenia (and How Not to Treat Them)
I was diagnosed with schizophrenia when I was 19.

It wasn’t a shock or anything like that. I had been moving up the diagnostic spectrum since my mid-teens. It started with depression, then bipolar disorder, then borderline personality disorder (BPD), then atypical psychosis, and finally schizophrenia.

The diagnosis didn’t change anything for me. I was still dealing with the same hallucinations I had before there was a word for it. The only thing that really changed was the medication I was now given.

And how people treated me.

Schizophrenia is a scary word. It doesn’t help that TV and movies portray it as the “go-to” illness for any killer. They also manage to confuse it with dissociative identity disorder (DID) – or multiple personality disorder – so many people think that people with schizophrenia will actually change personalities and start killing them at any moment.

This is not true. People with schizophrenia see and hear things that others cannot see or hear. They are usually not very pleasant and this can make them angry and confused because they perceive themselves as under attack. However, the same thing would happen if you were shouted at or abused by a real person. The reaction is not wrong; it is just something that is hard to understand.

People with schizophrenia are generally very peaceful. Most of their anger and confusion is turned inwards into self-harming behaviour, rather than being expressed outwards to harm others. In all the people I have met with this illness, I have only seen a few instances where the person goes uncontrollably mad.

Most of the time, they just want to talk about what is happening to them.

And most of the time, they have no one to talk to.

The worst thing about this illness is the loneliness. People think it’s voices or hallucinations, but for me it’s not. It’s the pain of no one understanding or wanting to understand. They are afraid because they don’t understand, and so we are alone.

People with schizophrenia know they are “crazy.” They are very aware of the reality. They have moments when they know exactly what is happening around them and when they know they are having an attack, and it is usually something they are very scared of, ashamed of, and don’t want to happen. The medication I am given to help with psychosis often leaves me unable to feel anything, which is worse than seeing something that isn’t real. This is why some people with schizophrenia come off their medication at some point. They just want to get out of the drug fog.

But even when they are lucid, they are alone. Often their friends and family avoid them because they don’t know how to cope with what is happening to them. Some people in psychiatric wards rarely have visitors. Some people are left alone at home, with only the community nurses to check on them. No one wants to hear about their days, which may be full of things that didn’t actually happen.

But they did happen. To the hallucinating person, these images are as real as real life to you. And when they talk to you about them, they’re not making them up; they’re telling you what really happened to them. You don’t have to tell them they’re wrong or that nothing happened.

Here are five of the most important things to do when dealing with people you know who are living with psychosis:

Still be their friend. Go for coffee. Talk to them about their day, even if it’s full of things you don’t understand. Love them.
Listen to what they have to say. It may sound “crazy,” but they are trying to communicate something to you. Are they talking about someone who doesn’t exist and scares them? Reassure them and let them know that you are there to protect them. Find a way to relate to them in the world they are in.
Don’t try to tell them that what they are saying isn’t true. It can be upsetting to hear your loved one talking about something that isn’t true, but telling them that may not help. They have their own problems, and telling them that they don’t have them won’t help; it will only confuse and upset them.
If they are having a good day, so be it. When someone is lucid, there is no need to bring up all the times they weren’t lucid. If they don’t, you can talk about it later. But if they are not, it will upset them to be reminded that they have problems. Let their good days be just good days, days when you can relate to them normally.
Be their friend. I repeat this because it is so important. If you were their friend before the illness, you can be their friend during it. It may upset you, but it is worse for them to be alone. Visit them in the hospital as you would someone who has had a bad accident. Visit them at home as you would before the illness. Cry about it in the car or alone because it is hard for everyone, but don’t let them be another lonely person with no one to talk to. Take the time. Change lives.

Stop. Take a deep breath. I know your mind is filled with thoughts, fears, and maybe even symptoms. But take a deep breath anyway. You’ll be fine.

First things first: Make an appointment with a psychiatrist.
One of the most important things you can do is make an appointment with a psychiatrist or psychiatric nurse. Schizophrenia is complex and nuanced, so it’s important to find someone who specializes in psychiatry, not your primary care doctor.
It’s also important not to jump to conclusions. In fact, there are many illnesses that can have symptoms similar to schizophrenia. Anxiety, depression, bipolar disorder, and post-traumatic stress disorder (PTSD) are among those that can have psychotic features. This doesn’t mean that mental illnesses with psychotic features are any less serious than schizophrenia, but they can present in different ways.

Write down what you’re feeling and experiencing. It can be easy to forget details or even entire events when you feel like everything is spinning out of control. There have been many times when I’ve experienced symptoms, thought about telling my doctor, and completely forgotten about them at my appointment. But the more details your mental health professional has, the better they can understand what you’re going through. Whenever possible, take notes about what you’re experiencing, not just what you think are symptoms. Adding more detail can help you and your doctor identify symptoms you may not have noticed and possible triggers for your symptoms.
Don’t underestimate the power of therapy when seeking treatment.
If your chosen psychiatrist doesn’t offer talk therapy, consider finding a therapist. Schizophrenia medications can be very hit-or-miss, so you can’t always rely on them to resolve all your symptoms on their own. Talking about what you’re experiencing and exploring what’s behind it can help you identify and address triggers, as well as plan what to do when those triggers arise. In my own experience with talk therapy for psychosis, it’s helped me cope with feelings of shame, better understand my illness, and also find ways to manage my symptoms in ways my medications couldn’t, such as how to organize myself when my cognitive symptoms come on strong.
Don’t believe the stereotypes about schizophrenia.

There is life after this diagnosis, and you will not automatically be the person the media describes you as. No matter how scary the media makes schizophrenia seem, this diagnosis does not change who you are as a person. Having schizophrenia does not mean you will be violent or dangerous. It does not mean you have anything to be ashamed of. And it does not mean you are less than human. You are important, you matter, and you are still you – you just have a few extra obstacles.

Find people you can trust and confide in.

Disclosure can be a huge hurdle in life with any mental illness, and the stigma surrounding schizophrenia can make it even more daunting. However, having a support system can be vital to navigating life with a serious mental illness. Having someone you can talk to or trust can help ease the burden that this diagnosis places on your shoulders. They may not know what to do or fully understand what you are going through, but they can still offer support. In addition to your local support system, finding others with schizophrenia and related disorders in person or on social media can help you feel less alone and give you an opportunity to connect with people who are going through similar experiences.

Don’t forget to take care of yourself.

Having symptoms and going through the diagnosis and treatment process is a lot to handle! Even if it seems trivial or strange, take time to take care of yourself. Take a bath, curl up under a blanket with a hot cup of tea, go for a walk, get away from the world for a bit – whatever makes you feel calm and centered. Even taking a few minutes to yourself every day can help your recovery go a little easier.
But above all, remember that treatment looks different for everyone.
The truth about schizophrenia is that it’s unpredictable and affects people in all sorts of ways, depending on many different factors. So it’s important to remember that what works for others may not work for you. Medication works great for some people. Not so much for others. And that’s okay. Remember that there are other options in addition to medication. Talk therapy can be very helpful for people with schizophrenia. Focus on what works for you, take care of yourself, and surround yourself with supportive people. The stereotypes, stigmas, and shame may be ringing in your ears, but stop. Take a deep breath. You are still you. And you can do this.

“How many parents would rather learn that their child has a life-threatening illness than hear that their child has been diagnosed with schizophrenia?”

Historically, doctors with burnout syndrome have been known to make these negative statements about schizophrenia at the time of diagnosis. If they’re wrong, they’ll re-diagnose the person as bipolar, but their comments still came true. Perhaps they’ve forced you to devalue your loved one.

I’m a mental health professional, and there’s nothing more exciting than meeting someone else who has experienced schizophrenia. I can immediately learn aspects of what they’re going through. That makes them a potential friend to me. I also come equipped with a handful of tools that I think might be useful to them. I’m also curious about what they can teach me about myself.

The strange thing is that I’m not alone in my worldview. Perhaps you’ve heard of the international movement called the Hearing Voices Network? Originating in the Netherlands from psychiatrists Marius Romme and Sandra Escher, the movement aims to normalize one of the many experiences associated with schizophrenia. The movement states that one in 10 people hear voices, and as a result, not everyone needs to be admitted to the mental health system. In fact, the movement has proven over the years that those who have been admitted can be incredible leaders and advocates.

Stereotypes You’re Upset With
Perhaps it’s unfair to blame anyone for responding negatively to the above dilemma because of all the negative stereotypes associated with the word schizophrenia. Many people think of a homeless person struggling to survive on the streets, posing, or carrying a cardboard sign under an underpass. Those who are a little more knowledgeable about the norm might think of a crowded boardroom and nursing home with nothing to do but smoke and drink coffee. Others in some states imagine a long stay in a state hospital, or a cycle through hospitals and homeless shelters. Of course, some might think of TV shows they’ve watched, like “Criminal Minds” or “The Guardian.” They might conjure up images of mass shootings that are spreading faster than our national homelessness crisis, which is so evident in the media.

Of course, as a parent or loved one, there is the stereotype of newly graduated social workers overseen by exhausted administrators who dehumanize their patients the moment their backs are turned. Perhaps it is difficult to watch this happen and easier to just stay out of it. Perhaps some of you will shield your children from this reality and try to care for them on your own.

Meanwhile, most of the public thinks that we as a nation are kinder and gentler in our industrialized times when we provided mental institutions. We all know that stereotypes are bad, but they still exist.

When Stereotypes Come True
I can relate. I worked in mental health and had great contempt for the lives that many of my clients endured. I respected my administrators, but it never felt right. Once I was able to practice independently, I became so successful at advocating for better care that it was one of the things that got me committed to a state hospital and thrown out on the street.

“You see, Tim,” I was told during my second visit to my psychiatrist, two months into my state hospital stay, “one time someone came in here and said they were being followed by the FBI, and we found out they were being followed. They hadn’t done much, but they were under investigation.”

Was he really referring to me? I had reported on murder and mayhem to the press several times. Yes, many of the stigmatized scenes are real, but they are only a small part of the picture.

Indeed, I was willing to call myself autistic long before I was willing to call myself schizophrenic. I had been in recovery for 15 years before I started to embrace the word “ugly” because the stereotypes were so threatening to me.

The Tough Decisions You Will Face
These stereotypes can really make you make tough decisions. Your relationship with your loved one, your perception of justice in social institutions, and your own stigma around mental health difficulties can all affect how you think about what you hear.

Even if your loved one is in an emergency and is struggling with conspiracy theories and opinions about you, remember that they know you well enough to know how you will react. They can sense your reaction and be bothered by it. Historical problems in the relationship can become exponentially worse. For a minority, there is real potential for violence when your loved one is in an emergency. How would you react if your loved one suddenly saw you as the root of all evil?

What will your friends say? How might they judge your parenting or partnership? How do you handle your need for privacy? How have you done this throughout their lives so far? Do your actions embarrass your loved one even more? How much do you trust your medical diagnosis? What have you heard about recovery? Does your loved one deserve the best treatment or should they be treated fairly like everyone else? What is the “best” treatment? What kind of money and resources do you have to play with? How willing are you to support someone who is not behaving “appropriately”? How much do you value their safety over your own?

Support for You
Healthcare providers will often refer you to the National Alliance on Mental Illness (NAMI) power structure for support, and you will connect with others who have faced these dilemmas for years. If you are willing to get involved, you can use these groups to make the most humane decisions.

Often, with this referral comes a clear understanding of the “chemical imbalance” that your loved one is suffering from. Suddenly, you are surrounded by volunteers who give their time and expect you to do the same and support their views. Acknowledging the power of the disease, setting behavioral limits, imposing medications, and accepting dilapidated housing options may be the standard you are encouraged to follow.

Indeed, people and families are as different as districts and NAMI boards. A variety of things can help.

How to Find Meaning in Stereotypes
When I experienced dehumanizing stereotypes, I felt like I was simply being victimized. I always thought I was criticizing dehumanizing practices, but I was still shocked! Oh, how awful, maddening, and dehumanizing treatment seems when you are in an emergency. No one believed what I said. I never thought I would be happy to put up with it. I saw no value in losing all my social standing and being locked up in squalid conditions. I feared for my future.

Now, 18 years later, two years after being discharged to the streets, I use all those humiliating experiences to convince the patients I work with that I know what they are talking about. I still feel overwhelmed when I think about what I went through, but I can now say that I went through it for a reason.

I often say that if I had known that my suffering could lead to meaningful work, it wouldn’t have been so scary. Instead of waking up with night terrors or peeing my bed, I could have lived through it more gracefully. And it wouldn’t have been so difficult for the low-wage work community that surrounded me to handle. So any innocent child who saw me would have run the other way. My negative energy was quite repulsive.

You Might Be Needed to Make It Possible
In the meantime, my father had made his point clear, thinking that prison and mental health storage would be the best thing that could happen to me. Like the treatment system at the Montana State Hospital that was set up to help me adjust to poverty and powerlessness, he seemed to want his negative prediction to be true. Still, he gave me a year of financial support to help me recover. I could have gotten food stamps, but my parents helped! And I still call them weekly. The memory of them being so anxious to support me while I cycled 20 miles a day to work 40 hours a week still hurts.

Thank God it worked! I was able to get back to my career.

Can you imagine how great I felt with a career in mental health, a wife, a dog, and a home?

Others Can Do This Too
So many others who are struggling can achieve so much healing and social empowerment by helping each other. We can do this by using our experiences to reach others who may seem unreachable to outsiders. But we also need to earn a living to make a living.

Not only have I been blessed with the opportunity to make sense of my pain, I have seen others do it too. I have helped recruit a team of four people to use their experiences with psychosis to help others. They have reached out and learned to lead groups in agencies.

What’s Missing for Schizophrenics in America?

Perhaps not everyone who struggles with the experiences associated with schizophrenia naturally chooses to become a therapist like I did, but the mental health system really lacks a vision for the sustainable roles that we schizophrenics can play. And I believe the first step toward creating such roles is to see schizophrenia as a culture rather than an illness.

In other countries, the voice-hearing movement has taken hold, healing many people and providing valuable roles for people. The premise is simple: Get voice-hearing people from different walks of life to come together and share their experiences in unmonitored support groups. Boy, can that be a lot!

I’ve been leading these support groups for the past 18 years as a professional who openly reflects on my own experiences with schizophrenia. Like many voice-hearing groups, the focus of my groups goes beyond just hearing voices. I like to include and normalize any experience that leads people to alternative ways of thinking about the way the world works.

I think that support groups like this help to make schizophrenics care about their siblings’ experiences. Mutual learning and coping strategies emerge. So allowing schizophrenics to acculturate and be schizophrenic is a great step in the right direction.

The Need for a Living Wage

But I think support groups are just the beginning of what is needed to give culture a meaningful role. In Oakland, California, outreach services to homeless camps, boarding houses, agencies, and shelters can invite institutionalized individuals into support groups. Many of the people I serve on the streets of Oakland can benefit greatly from visitors who come to their boarding houses and support houses and bring them to support groups. They can then learn to join groups in the community and overcome some of the barriers that isolate them.

Such an organization can provide significant training and employment for schizophrenics to develop a variety of skills. It can give them a chance to make sense of the stereotypes they experience or fear, so an education/outreach program can help schizophrenics move into better and better jobs.

How Can You Help Your Loved One Achieve This Vision?

I think it’s important to end the medical perspective on schizophrenia. Updated research defines psychosis more along diagnostic lines as a syndrome or a neurodevelopmental disorder like autism or dyslexia. This really supports the work of the Hearing Voices Network, which claims that voices and other experiences are truly valuable and have real meaning that needs to be addressed for healing and survival.

Trust me, there may be complex underlying issues that need to be addressed.

So while you’re experiencing schizophrenic stereotypes through your loved one, remember that they can become your child’s mission in life. You can’t be responsible for all the evil in the system, but you can bring the updated research and success stories of the Hearing Voices Movement to your NAMI meetings. You can find ways to support employment for people with schizophrenia by empowering organizations like the ones I suggested above. I ran a program like this for a year and a half until temporary funding was available. I know it can be done.

Successful Schizophrenics
There are many things that can help schizophrenics find roles that utilize their passions and interests. As a culture, schizophrenics have historically been persecuted like deviants in Western society. However, if we explore many traditional societies, we will see that many of the skills labeled as illnesses are shamanic and spiritual. There are many wise traditions to explore when creating solutions.

I personally do not flush the psychiatric tradition down the toilet. I myself use medication and work with others who do. I admire and support those who do not. However, we must offer solutions that help heal the endemic abuses that occur within the medicalized system. One solution does not fit all.

Finally, I am not afraid to use a word other than schizophrenia. I call my groups and programs private messages.

After being diagnosed with schizophrenia, I am learning a whole new way of living.

At 21, many ghosts haunt my life, lost in the whirlpool of my own mind. I am not at home in my own body. My face, my eyes, my skin, my bones. The people around me seem unreal. I am never sure who is real and who is not in a crowd. I exist between my morning pills and my night pills.

It is true that I need help many times. Someone to remind me to take care of myself. To shower, eat, clean my living space, brush my teeth, and take my medications. Someone to help me when I am distracted, someone to open the blinds when I am feeling paranoid, or someone to encourage me to go outside. I need certain routines to succeed in my college classes. I have to follow a straightforward schedule for sleeping, eating, taking my medication, and studying.

Wait, I am a great hibernator; the next two heartbeats and a hummingbird with a mouth full of tongue.

Hallucinating is the most exhausting part of schizophrenia. It’s talking without being spoken to. Seeing yourself with more faces than you can count and forgetting to count the people who aren’t real.

But the schizophrenia I know well and the schizophrenia you’ve been misinformed about are different entities.

Schizophrenia is an uprising of my own mind. Schizophrenia is not violence. In fact, people with schizophrenia are more likely to be victims of violence than perpetrators themselves.

I want people to understand schizophrenia the way they understand all illnesses. I don’t want to hide behind a wall of lies, blocking out the truth of my reality. The stigma attached to everyone living with schizophrenia is a false monstrosity. Bad guys, mad scientists, serial killers, malevolent geniuses, and horror movies. I’m tired of seeing these clichés. I don’t want people to be afraid of me, to think I’m violent or easily angered.

There is so much I want to teach people about what it is like to live with schizophrenia, so much misinformation I want to reject. I wish I could tell people: “I have schizophrenia and I am kind, gentle, and loving”; “I have schizophrenia and I am high-functioning”; “I have schizophrenia and I am not crazy.”

I want us to bring the conversation about mental health and mental illness into schools and homes. We need to stop using mental health diagnoses as adjectives and stop calling people, things, and events “crazy.” I have been called crazy, to be honest, but the more I hear that word, the more it becomes derogatory. Mental illness is more than just sadness, pain, and suffering. It is a personal and lifelong journey. It can be fatal, it can be deadly. It can also be a beginning, a shaping, a life-changing experience. It should never be taken lightly.

An advocate for me would save me a lot of pain. Someone who would help me communicate with doctors in a definitive way. Someone who would help me get diagnosed early. I spent three years experiencing psychotic symptoms almost every day. I woke up on the verge of losing my mind completely and went to bed on the edge of a disturbing reality. It took three years, six psychiatric hospital stays, more diagnoses than I can count on one hand, three job losses, hours of sitting with caseworkers, phone calls to the disabled, and more medication than I could ever afford. It was a terrifying journey, and I nearly lost my life more than once.

But now, with a diagnosis, the right medication, the right doctors, and the right support, I see no reason why I shouldn’t be successful with a little help. I see no reason why I shouldn’t graduate from college and go into the community health field, teaching young adults about early warning signs of mental illness and mental health, preventive self-care, warning signs for loved ones and friends who may be suicidal, crisis resources, and community support.

I finally get on a good medication that blocks the voices and hallucinations. My schizophrenia is well-controlled, and you wouldn’t know or recognize my illness if you met me on the street. But I shouldn’t have to hide it.

I fully intend to give back to the community of doctors, EMTs, therapists, and friends who saved my life. I want to save the lives of others, or at least alleviate the pain and fear that mental illness causes. And I see no reason why I can’t do that. It’s all in my hands, and I see no problem in achieving my goals despite my disability.

I want to dedicate this piece to my brother for all the strength he taught me to live. I love you so much.

As someone who has survived schizophrenia, I have a unique perspective on how to help others who are struggling with schizophrenia.

Here are my personal thoughts on the subject:

Learn all about the disease and how to cope with schizophrenia. In my experience, families (understandably) struggle to cope when their loved one is disconnected from reality and may be a danger to themselves or others.

In my experience, one of the main symptoms of schizophrenia is psychosis. People who experience psychosis experience a frightening experience.

Don’t take it personally. Those affected may lash out at you… if they are in a psychotic state, they have disconnected from reality. Understand that they are in a “dreamland”… try to empathize with them, don’t argue with them, but make sure they get help in a controlled environment.

Be patient, empathetic, and trust that they will get better.

Believe me, they can recover, but they may never be the same.

Trauma can affect people in ways that burn bridges… it’s the brain’s way of physically coping with something it literally can’t handle. Having people tell you that what you saw or heard didn’t exist and that you were just “crazy” when you saw or heard it so realistically and tangibly… that in itself can be traumatic.

People who have a psychotic episode may not have PTSD, but they can come out the other side with PTSD.

Personally, I’ve never been able to fully recover. Don’t get me wrong, I’m stable, but I’ve changed. From my perspective, when a major neural pathway is severed, it never comes back the same way, but it reconnects over time. In someone’s brain, it can permanently change their personality, but that doesn’t mean they can’t come back to reality and stop being a threat.

A common stigma against people with the condition is that someone who has recovered from psychosis is still considered schizophrenic and “dangerous to people,” even if the person who has recovered is actually 100% real and not dangerous to people.

Communication can be problematic, so patience and empathy are key.

For a moderate amount of time in the beginning, I lost all of my short-term memory, even though my long-term memory was perfectly fine! Because I lost my short-term memory, I couldn’t hold a conversation long enough to remember what I was talking about. It was very frustrating. But I remember everything I was thinking at the time, and even thinking about it makes me feel so embarrassed!

After the frustration of not being able to finish a sentence, my coping mechanism was to bypass the “filter” process and start communicating more with my gut feeling instead of my thoughts. This led to me saying things and interrupting people. I felt bad about doing this because it made me come across as rude and argumentative… but I knew it was the only way to communicate and get my message across.

During this period of troubled communication and being lost in “dreamland,” many people stopped being my friends and very few stayed in touch to see how I was. I appreciate those who stayed in touch; they make me feel more valued and worthy of love.

People with schizophrenia may seem “not there,” but they really are.

A person in psychosis is not “out of their mind.” They have difficulty communicating or perhaps are not fully in touch with themselves and misunderstand what is happening around them. Think of a dream state—this is an example of living in a dream, or perhaps living with one foot in the dream world and one foot in the real world. This is psychosis, a loss of connection to reality.

Show them that you will be there for them.

Stay in touch with your family or caregivers, even if it means distancing yourself for them. Of course, your friend needs to know that you are worried and will find comfort in that. Being schizophrenic can be a scary experience, and feeling abandoned on top of that makes the trauma even worse.

So, try to rebuild bridges as much as you can. They may not be in reality right now, but they really need you.

They will get better with help. Please keep the faith.

Recovery is possible when “best practices” are applied in the mental health system, families, and society in general. “Getting better” means getting well enough to have a job, drive a car, take care of yourself and your loved ones, have a social life, set goals and achieve them, etc.

Getting better takes time, treatment, medication, patience, and understanding from loved ones. In order to get better, those struggling must accept their diagnosis, continue taking their medications, understand their symptoms, and consciously manage their positive symptoms. When it comes to recovery, hope makes all the difference!

People fear what they don’t understand. Many people with schizophrenia never have another psychotic episode after their first one and are actually as stable as anyone else. Yet people fear them. People even describe people who have recovered as “schizophrenic” and see them as dangerous, when in reality, the opposite is true. Labels and generalizations are not true and make dealing with traumatic illness much more difficult.

Educate yourself. Trust that they will recover. Know that they are “out there.” Empathize and support. Protect yourself; seek psychiatric help if they pose a danger to anyone you love. If you are keeping your distance, stay in touch with your care providers and/or family to monitor their recovery.

Your diligence in this regard is more important than you realize.

Of course, there is a real, medical definition of “schizophrenia,” but living with the hallucinations and delusions that come with it can be even harder to define.

This is made even worse by the fact that despite the awareness of mental health, schizophrenia is still widely misunderstood. So to learn more about schizophrenia, we need to turn to people who actually live with it. To do this, we partnered with Bring Change to Mind and asked people in our communities to share something they didn’t realize they were doing because they were living with schizophrenia.

Let’s spread the word. Here’s what they shared with us:

“I play as much music as possible so I can sing along to drown out the noise. I’m lucky that my workplace has music playing 24/7 and I know most of the songs, so I get through my workday in a good mood because the customers think/see that I’m singing happy songs and I can focus and function.”
“I keep to myself because I feel the stigma of schizophrenia pushes them away from me.”

“Not making eye contact. Some people give me a feeling that makes it impossible for me to make eye contact.”

“Checking to see if people still like me. Making sure that when people say they hate me, the voices are lying.”

“Trying not to break off in the middle of conversations all the time.”

“One thing I have to do is sleep with earplugs to block out the noises, both at home and in my head.”

“I’m very quiet in social situations most of the time. Some people find this rude or strange, even think of me as ‘stupid.’ What they don’t realize is that I’m constantly living in the dark depths of my mind and soul. I struggle to stay sane and keep the delusions and gloomy thoughts at bay. It takes a lot of mental effort.”

“I start touching and holding random objects to stop the tactile hallucinations taking over.”

“I actually pay attention to everything that’s going on. It may seem distracted, but I’m not missing much.”
“When I get irritable or easily upset with my family and friends, I don’t want to get hurt. My head is overloaded with busyness or thoughts and voices, so sometimes having other people make small talk can be too much of a burden on my already clogged mind. When I push people away, I am afraid of losing them.”

“I deliberately avoid the happiest moments in my life because I am terrified that the universe will cruelly take them away from me (like losing my wife or my dream job).”

“When I ask you if you called me or if you saw this – I am not joking. I really need you to help me get through it. Oh, and I always have music in my ears because it distracts me from these voices (voices that will never stop).”

“I have delusions, hallucinations, and my mind misinterprets things that are there. I reach out and touch things to make sure they are really there and look at things to determine that they are what they are. Most people don’t notice or even realize what I am doing.”
“I can be paranoid around everyone, so I’m really sensitive socially. I withdraw instead of being close, but I don’t want to be.”

“I’m socially awkward and don’t know what to say to my family members or how to voice my opinion on things without it being weird.”

“Constantly shifting my eyes during conversations.”

“They think I’m ignoring them or ‘imagining’ things as I try to fight the voices or noise in my head and come up with an answer.”

“I prefer to stay in dark rooms because I have fewer hallucinations.”

The constant whispers, mutterings, half-heard insults coming from behind me, but when I try to see who it is, there is no one. The other voice that narrates my life, pointing out my failings and shortcomings, seems to enjoy shouting how slow and useless I am to understand things and catch the whisperer. The last voice continues to be itself, providing a background stream of insults and disparaging observations. Today, it seems to really push how hopeless and useless I am.

Day after day, week after week, they go on with very little respite. Sleep is no longer needed every day – only short naps – because I have to watch and observe everyone; I know they want to harm me. They can see the aura of evil surrounding me like a dark cloud, and they know what I am; they know that I am fundamentally evil, regardless of the good I try to do every day. I know that I am like a demon trying to work against their basic nature by doing good, but my very existence infects everything around me with evil, bringing harm and evil to those close to me. If I didn’t exist, the damage I’d done would be over. I’ll deal with it once I find the source of the Whisperer.

I know where the Whisperer is coming from: my roommates. They do it, and they have hidden little speakers where the Whisperer is coming from. Now it’s time to find the evidence. When I find it, the Whisperer will stop. I know it will. I start looking for the hidden speakers that I know are in the living room. I look under the couch and the chairs, look inside the cushions, tear them open to see. I cut open the back of the couch; maybe they’re hidden there. I use a broom to check the ceiling to see if I can uncover them. I’ll fix the holes later—it doesn’t matter now, finding the Whisperer is all that matters. I smash the wall unit, slam my fist through the four glass panels in a rage. Now my hand doesn’t work because I’ve cut the tendons in my joints. I never find the Whisperer. My roommates come home. They lock me in the house while they wait for the police and the ambulance to arrive. I set off, my plans to end my existence thwarted by the intervention of my roommates.

The above words briefly describe my first major psychotic episode and my first hospitalization. While it was happening, it all seemed perfectly acceptable behavior to me. Tearing apart the living room was a necessary consequence of my search for the speakers that created the whisperer. It all made perfect sense to me. All the racing, spiraling, cascading thoughts—the raw truth of my conclusions became self-evident to me. My schizophrenia became apparent then. The clues had been there for some time. Two of the voices I had been hearing had been occurring fairly regularly for years, but had gradually become more persistent.

This happened 20 years ago. Since that incident, I have had other incidents, some worse. Over the years, I have had multiple hospitalizations, drug after drug, and ECT to break the psychosis. While this experience is unique to me, the pattern is so similar to others with schizophrenia that only the details are different. Fear, confusion, loneliness, frustration, anger, and racing thoughts are a common experience shared by all of us with schizophrenia. For many people with schizophrenia, antipsychotic medications seem to stop the worst of the things I described above. For some, the medications will stop the voices, relieve the paranoia, and relieve the delusions. For others, the relief will be minimal. Perhaps the voices are quieter, the delusions or paranoia may not have the same urgency or level of fear. For a very small minority, the medications do not seem to work at all. Here is where I fall. I am lucky.

I have tried many different medications over the years. Sometimes they seemed promising, but sooner or later my symptoms would flare up and I would get sick again. Another hospital stay would follow. This continued for several years before it was decided that my schizophrenia was resistant to treatment/medication. This doesn’t mean we didn’t try different treatment protocols or interventions. We do them, we just don’t do them as often as we used to. I don’t have any regular medication at the moment, but I’ve managed to stay out of hospital for six years. Because the medication didn’t seem to be working, I had to find ways to manage my symptoms so that I could function and get on with my life. I think the one thing that made a big difference was agreeing to work with a psychologist early on in my illness, and continuing to do so, especially when things started to get out of hand.

Working with a psychologist helped me identify ways to manage my voices. They helped me identify some beliefs that felt right and obvious to me, but weren’t necessarily as right or obvious as I thought. While the beliefs are still there, being able to accept the possibility that they may not be true helps to reduce their impact on me and the paranoia they feed. The things I have learned from various psychologists over the years have made my life easier to manage.

Another thing I have discovered on my journey with schizophrenia is that I can draw. Art has become a big part of my recovery and living with schizophrenia. I use it to express what is going on in my head, to distract myself, and to get away from my voices and other symptoms.

While my life is far from easy and rarely free of schizophrenia symptoms, it is still a pretty good life most of the time. Much better than what I experienced in my early years of trying to live with schizophrenia.

I woke up this morning with the words “help me” firmly in my mind, but I couldn’t get them out of my mouth.

I wish schizophrenia hadn’t taken over my brain on days like today. This morning, I searched my entire apartment for the cameras and tracking devices (“bugs”) that have been bothering me since I turned 14. That was almost six years ago. This morning, I tried to convince myself that the water wasn’t poisoned so I could brush my teeth. I skipped breakfast because the food was definitely poisoned. I went to class, but it took me 15 minutes with a combination of breathing, coloring, and repeating to myself, “I feel good, I feel great, I feel great.” (Thanks, Bill Murray).

I walk out. My head is so low I can’t see what’s in front of me. I sit in class and don’t talk to anyone. I read because I know it’s the only thing that helps me on days like today. I pay attention in class, but I keep scratching my hands because a bug has been placed between my fourth knuckle. I start hearing voices telling me how much space I take up. How I should kill myself.

I run to the car so the FBI agents don’t have time to catch me. I go home and immediately call my apartment again. I do my homework, but I take a break to distract myself from these terrifying experiences. At 5:00 p.m., I go outside to a pitch-black place. An hour of coping skills to reassure myself that no one is there. I run to my car and to class. I barely pay attention in class for fear of what will happen if I look up from my notebook. The day ends. I don’t eat or shower because of the poison. I write, draw, dance, read, etc. for three hours. Some days I try to keep them away, but they don’t go away. I go back to bed, where I lie trapped inside my own head. I close my eyes and the world goes black. Maybe tomorrow will be a better day.

I live with a condition called disorganized schizophrenia, but I hope everyone with health issues can relate to this. I have spent hours in different therapy sessions to help me cope with life. Some sessions and types focus on coping skills. Some focus on life skills. Many have taught me how to stay calm so that my psychotic break doesn’t scare others. Or how to recognize when my symptoms are getting worse so that I can get help.

Over time, I began to realize that my daily life is similar to yours, but the details are different.

Others wake up and put their feet up to get ready for the day. I put my feet up to do grounding exercises to convince myself that I am real. Others open their closets and plan their outfits for the day. My closet is already open, so the hallucinations have a place to go that isn’t around my bed at night. My clothes have been laid out since earlier this week when I had the presence of mind to prepare, but they are under the dirty clothes from yesterday because I have no motivation or thought process.

Others may or may not eat to prepare their bodies for the day. I don’t eat because of the delusional fear that food is poisonous. Others know that they need to go to the bathroom to brush their teeth and wash their face. I had long forgotten by now, but the old me who took off my clothes remembered to reset my silent reminders. My phone reminds me to brush my teeth and wash my face, assuming I have the motivation.

Work and school are different for me too. Sometimes I use other people’s notes because mine are just random letters. Sometimes I tape the lecture so I can remember being there and what happened. Or because I can’t focus or hear because of hallucinations. I hear myself accidentally ask the same question twice. When I ask again, I hear the professor take a long pause. I still have the claw marks I drew on my arm because I knew I had done something wrong again due to nervous anxiety. Time for more grounding exercises.

Social events are few and far between, but they work differently. I’m not shy. I just wait to see who’s talking to whom, so I can tell who’s real and who’s hallucinating. I lean back against the wall so I know the voice whispering my name is just a voice.

Most people enjoy dinner. I’m exhausted from faking it and focusing all day. I convince myself that a restaurant where I can watch the food being made is safe. I look weird wearing my jacket inside, but it’s raining on me, so I have to. Most people don’t have tactile hallucinations. Maybe I’ll remember to take it off next time. It’s too late now, because the timing would be weird, and it would also keep me from scratching my arm for the 10th time this week.

Nighttime is scary. The rest of the world has slowed down, but my brain is still ticking. The doors are left open again, so they’re not standing around my bed again. I have the subtitles on my show, so I can see what they’re saying. My headphones are plugged in but not plugged in so I can block out the radio noise at night. Time to reset the silent reminders.

It’s exhausting. Many people make changes throughout the day that you or I don’t have to make. Some deal with pain. Some people live with constant emotional distress, weakened immune systems, mental disorders, stress, dietary restrictions, and more. Everyone’s routine looks different. We need to understand these things and be patient with each other. This world is hard enough, but if we could be kind and accepting to others, maybe it would be better. Be patient with yourself and others. We all live with daily changes.

I guess you could say it’s like any other marriage. It has its ups and downs, its good days and its bad days. For the most part, it has (and needs) a lot of love and affection.

It’s not an easy road like any other marriage, but it’s very rewarding. My husband is still my husband, just as he always has been. In between the hospital stays and psychotic episodes, which are fewer and farther between, there are moments of strength, love, and commitment like any other marriage. Some couples struggle with financial issues. For us, it’s mental illness, and I’m fine with it.

My husband’s diagnosis allows me to help and be there for him in a way that is unique to our marriage and our situation. I talk to him about his psychosis. I help him keep up with his medications, his appointments, and everything in between. I also take him to the movies because I love it (even if it’s romantic). I love driving with him and spending time with our families. Our marriage is as unique as any other marriage.

Sure, it can be stressful, but stress accompanies almost everything I do in my life. We love to do things like go to the zoo or go out to dinner. Honestly, the only real difference is that sometimes we have to take extra precautions. For example, sometimes we have walked out of restaurants or movie theaters because they were too loud due to my husband’s schizophrenia. Other times, we have to be prepared for something that could trigger an attack. But most of the time, it is as unique as any other relationship. We live, laugh, and love together on this journey known as life.

Does marriage include a “disability” (I use the word disability because I personally find it misleading, but that’s a story for another day) for everyone? No, everyone handles these things differently. But it works for us. If you are truly in love with someone and are willing to go through hell and back for happiness, then do it.