Tag: Mentalillness

I have been diagnosed with schizophrenia. I can do everything I am supposed to do, like take medication, eat right, and have a good sleep schedule, but I can still experience some paranoia. One of the things that has helped me cope with my paranoia is reading about other people’s experiences with paranoia. When I read what they have experienced, it’s an “aha” moment – ??“Oh, I’m not the only one who has this symptom.”

A few days ago, I drove to the dry cleaners to pick up some stuff. I assumed they would be open. Even though I was early, the doors were locked. As I was leaving, I saw a car with a license plate that said “Army Veteran” on it. I immediately thought this person was the owner of the dry cleaners, and somehow they had heard me coming and closed early, so I couldn’t get to the dry cleaners. I had paranoia on the way home. I saw people in their cars and thought they were wondering what I was going to do next. I really had to focus and block out the paranoia so I could get home safely.

Sometimes during my paranoid thoughts, I hear voices. A voice says, “You’re not schizophrenic,” and it makes me laugh. I first started hearing it when I was leaving the military, but I still hear it occasionally.

Part of my paranoia has to do with a girlfriend I had years ago. Sometimes at night, there are cars with their headlights on in front of my sliding glass door, and I think they’re her friends following me. I look at them for a few seconds and try to block out the paranoia. What helps me cope with this type of paranoia is to distract myself by listening to jazz or watching TV.

I can get paranoid when I see people around my car in the parking lot. I know no one is messing with my car, but it’s hard to come to that conclusion when I’m paranoid. When they finally leave, I get out, walk to my car, and examine the scene. I check the tires and the paint, to make sure everything is in order. I can avoid this paranoia by looking for evidence. I live in a very safe neighborhood, and the parking lot is well lit. I park under a street light, so there’s no logical reason to think someone vandalized my car.

When I drive, I often think I’m being followed. On days when I don’t get much mail, I can easily get caught up in thinking someone has taken my mail. When I use my credit or debit card on the phone, I get anxious because I fear someone is listening in. I’ve had occasions where I think someone in the kitchen has contaminated my food before it’s served to me. I always get paranoid when I see a police officer, so I’ve conditioned myself to take a deep breath and wave at them.

I’ve talked about some ways I cope with my paranoid thoughts. Sometimes, I call my family to talk about the incident that’s worrying me. One of the most important ways I cope with my paranoia is to examine the evidence. I ask myself questions about the reality or unreality of what’s happening. I also practice being present by focusing on what’s real around me. What can I hear, see, touch, or feel?

Those of us diagnosed with schizophrenia can get lost in the symptoms of paranoia, but for me, it’s important to ground myself in reality – what’s happening around me. I experience paranoia because of my diagnosis, and for no other reason. Reading stories of paranoia helps me understand that this is a common symptom in the schizophrenia community. By sharing our personal stories without fear, we learn how to confront our paranoia.

There’s More to My Schizophrenia Than Voices and Hallucinations
With my last change of medication and more recently my increased dosage, I remember suffering from a lack of energy, motivation, and sexual desire more than I was bombarded with voices and the occasional visual hallucination.

Schizophrenia—especially schizoaffective disorder for me—is much more than just positive symptoms. In life, in the media, and among my peers and family, I’ve seen these positive symptoms over-represented in discussing and understanding not only my schizophrenia, but also schizophrenia as an illness that affects so many others. People often assume that if a person with schizophrenia isn’t actively psychotic or hallucinating, they must be fine. For some, this isn’t the case. There are days when I have to really, really fight with myself to get something done. I don’t have the motivation or drive to do something as simple as a quick homework assignment, or doing the dishes becomes a monumental task. Some days I feel like I’m floating; like I’m outside my body and can’t connect enough to get dressed. Other days, I’m filled with a huge void so deep and dark that I have to search for myself again. Through dialectical behavior therapy (DBT), I’ve learned to cope with my hallucinations. I’ve learned to process them in a way that allows me to live with them instead of fighting them. But no amount of coping or awareness gives me the energy to do what I need to do. It’s a miracle I’m not falling behind. I spend most of the day fighting myself for 10-minute tasks, half asleep, trying to force myself out of bed when I want to give up. And it’s not easy.

How would you describe a complete lack of motivation? It’s a feeling of absence, of want, of need, but not being able to find it. It’s wishing someone would tie a rope around your waist and you could follow them. Needing to do something and not being able to do it. Struggling with an invisible part of yourself. And it’s endless.

I’m good at keeping up appearances. It takes an hour to clean the house, and I spend six hours trying to convince myself to get up and do it. But eventually, it gets done. It’s easy to take a nice Instagram photo and write a nice caption. No one needs to know. Even if they did, I wonder if they really get it.

You hear a lot of people say, “It’s okay if all you do today is breathe.” But they don’t understand the shame of just breathing when the world is moving without you. It’s okay if all you do is breathe. Sometimes, all you can really, honestly do is breathe. It’s okay if all you do is take a shower, do a few dishes, or finish a paper. It’s okay even if you don’t feel good. I think people who say these things often don’t understand the incredible burden of illness. The incredible agony of trying so hard and not achieving anything.

I get it.

And that’s really okay.

Just breathe.

Tomorrow is not going anywhere.

(From You)In 2007, I had spent three years in college, was at the height of my cross country career, was a Dean’s List student, and was a youth coach. My life took a 180-degree turn when I started experiencing symptoms of schizophrenia. Early in my journey and before I received a proper diagnosis from a healthcare provider, I struggled with feelings of depression, intense paranoia, and psychosis. At the time, I didn’t know what a hallucination was, so when I heard voices, I thought other people were talking about me. I didn’t realize the voices weren’t real, so I did my best to rationalize what was happening and find ways to move on with my life without the help of medical professionals. To make matters worse, as a black woman, the stigma around mental health was something I had witnessed in my community since childhood. The thought of sharing my experiences made me anxious, and nothing could have prepared me for the widespread inaccurate and deeply hurtful judgments I would encounter in the communities where I once felt safest.

At age 22, I reached a low point when I found myself in the midst of a psychotic episode. I ran away from my family and support system, was arrested on felony charges, and ended up in the hospital for six months due to my schizophrenia symptoms. In the hospital, I was finally diagnosed and forced to confront my illness to understand how I ended up in prison at the height of my college career. While in the hospital, I took medication for the first time in my life. What I learned from this is that when you have the right treatment regimen and support systems in place, there is a light at the end of the tunnel. I worked with several different psychiatrists until I found someone I trusted and who could see me where I was. Together, after some trial and error, we found the right treatment plan. By finding and sticking to the right medications, and leaning on my friends and family for love and support, I was able to change my mindset about recovery and begin sharing what I had learned to help others.

For a long time, I kept my diagnosis secret and private. I was often looked down upon in my community because of the pervasive and harmful myth that those living with schizophrenia are violent or dangerous. For the past 16 years, I have made it my focus to block out the negative noise and advocate for myself and others living with this mental health diagnosis by sharing my story and educating my community about what it really means to live with schizophrenia as a Black woman. I now know how important it is for others to hear my story, so I started a blog called Overcoming Schizophrenia to share my experience and help offer an alternative to the harmful stereotypes we hear and read so often.

In the process, I have come out of my shell and my diagnosis is no longer a secret. Instead, I want to share my journey with others. Today, I actively work with the National Alliance on Mental Illness (NAMI) and have been a peer counselor for various organizations for the past decade. I have also worked with law enforcement to educate them about the stigmas associated with schizophrenia; a full circle moment from my early diagnosis days. I hope to continue working on advocacy projects with my local community and even one day with Congress so that I can continue to debunk the myths about schizophrenia and show that recovery is possible. Schizophrenia is a complex and completely misunderstood illness, so I’ve made it a priority to be active in the community and have written several books about my experience, from how I coped with my diagnosis to the benefits of therapy in addition to medication. The one I’m most proud of is my latest book, a journal about loving your soul, with thirty prayers and self-assessment questions.

If you are reading this story and are struggling to find hope and community after a schizophrenia diagnosis, know that there is a way forward and that you are not alone. I hope that it inspires others to seek out the help that is available to you on your path to recovery. My journey has not always been easy, but I am now focused on my own journey of personal growth, balance, and healing. Therapy, healthy coping skills, and the support I have found through writing about my experiences on my blog have helped me on my journey to recovery. I still struggle at times, but because time has shown me that I am resilient, I know that I can overcome the challenges I face. And so are you. Learn as much as you can about schizophrenia, find your people and a treatment plan, surround yourself with good people, and give yourself all the love you need. With support and the right treatment regimen, there is hope for recovery. And please know that I am supporting you!

You are not alone.

‘Harmless’ Comments That Really Hurt People With Schizophrenia
When it comes to schizophrenia, many people are more familiar with the stereotypes and stigmas than the reality. They’ve probably seen the sensationalized version of schizophrenia portrayed in movies, but they don’t realize how dramatically different it is from a real person’s experience of living with schizophrenia.

Unfortunately, this uneducated perspective sometimes manifests itself in offhand comments and lighthearted questions that may seem innocent but are actually quite hurtful to someone with schizophrenia. If you have schizophrenia, you know how devastating it can be when someone makes a comment that (whether knowingly or unknowingly) implies that you are dangerous or untrustworthy.

The only way for people to learn what comments to avoid when talking about schizophrenia is for those of us who know better, who know how hurtful and inaccurate these stereotypes and assumptions can be, to expose them.

“My psychologist at the time told me that I didn’t look like schizophrenia and therefore it wasn’t possible for me to be schizophrenic.”

“It must be nice to always have someone to talk to.”

“When I told a friend this week that I was having a really hard time because I was having really strong hallucinations, she responded with the weirdest comment I’ve ever received. They said they were jealous because my brain was ‘making things up.’”

“What kind of drugs do you do?”

“When I moved in with my boyfriend and a couple of roommates, one of our roommates asked me if I would try to hurt or kill someone or anything because I have schizoaffective disorder and I got angry or something like that. It hurts my feelings a lot.”

“Stop trying to manipulate or manipulate other people.”

“‘I’m glad I don’t have schizophrenia, I’m just happy I’m depressed.’ That’s just offensive because it’s degrading. It’s a nasty insult and it treats schizophrenia as a terrible, debilitating disease that can never be cured or live a normal life. And who says I’m not more stable than you?”

“Are you going to go crazy and hurt someone?”

“[My priest] told me that his nephew, who has schizophrenia, was getting worse with medication because ‘he has a demon.’ He explained that it was either demonic possession or compulsion. I told him that people had tried to perform exorcisms on me before, but they didn’t work because I wasn’t possessed. His response was, ‘If you find someone who knows what they’re doing, it works.’”

“A sarcastic comment — ‘Did you miss your meds?’”

“Saying that people with schizophrenia have multiple personalities (which is not even a diagnosis anymore, and even if it was, it has nothing to do with the symptoms of schizophrenia).”

“Calling people who hear voices ‘imaginary friends.’”

“I often hear the word ‘psychotic’ misused. Having hallucinations, delusions, or disorganized thoughts is psychotic — psychosis is a serious symptom, not an insult.”

“Tin foil hats [and] jokes about wearing straitjackets.”

“When I hear someone describe someone with schizophrenia as a ‘schizo’ in a derogatory tone, it takes away some of the resilience and self-acceptance that I’ve worked so hard to build.”

If you’re having a hard time with schizophrenia symptoms, the easiest and most effective therapy I’ve found for schizophrenia is to take medications prescribed by your doctor or psychiatrist for decades. The Mayo Clinic, a respected organization I trust most for medical truth, calls medications “the cornerstone of schizophrenia treatment.” Taking medications for the first time can be a scary experience, but the benefits are undeniable. Over time, taking your medications can become second nature. Like brushing your teeth or making dinner.

You Don’t Have to Lose Your Creativity

One of the most frustrating myths I’ve heard about taking medications is that you’ll lose your creativity. Sorry for my language, but what a load of nonsense. As I make clear in my YouTube video , fuck the stigma around medications. In my experience, this simply isn’t true. Of course, medications for mental illness often have sedative side effects. As a result, you may be less inclined to pursue your creative pursuits because you’re sleeping too much. This can be balanced by working with your psychiatrist to find a dose that minimizes the sedative.

Finding what works for you

The best therapy for schizophrenia is not the same for everyone.

For me, an antipsychotic is absolutely terrible. I get angry every time I think about it, much less talk about it. This drug was not for me. But don’t let that stop you from trying an antipsychotic yourself. I have met some people who have had incredible success with it. It saved their lives. For me, I felt like it ruined mine. The most important lesson from this: If the side effects of the medication are disrupting your life too much, don’t be afraid to ask your psychiatrist to try something else. There are plenty of medications on the market. The sooner you find one that works, the sooner you can get closer to living a “normal” life.

Beware of long-term side effects

For only a few months, I was on an atypical antipsychotic as my therapy for schizophrenia. Within just two to three months, I noticed that my jaw had become extremely tight. To this day, I have continued to have problems with my jaw for just that short period of time. Be aware of side effects and work with your doctor to stop any regimens that may cause long-term damage.

Another example of this is medications that cause weight gain. Even people who are naturally thin can gain too much weight. If this weight gain cannot be controlled with diet and exercise, you may need to talk to your doctor about reducing your dosage or switching to something else. Don’t wait too long for something like this. Uncontrolled weight gain often results in diabetes, a life-long and life-changing disease.

A Family Perspective on Schizophrenia Support and Treatment
For the past forty years, my family has supported my brother who has schizophrenia. Together with my parents and sister, we have experienced the challenges that families face when caring for loved ones with mental illness and navigating the complexities of our healthcare system. It hasn’t always been easy to talk about, but I think our family story will resonate with many who have lived through this experience in silence.

My brother’s mental illness became apparent in his early 20s. He had always been very bright, had an excellent memory to this day, and loved music, partying, and fashion. But he began to struggle greatly in college, eventually failing to graduate or find a job. This may be true in many cases; mental health issues first become apparent during college, when many individuals are living on their own, away from familiar surroundings. This is yet another reason why it is so important for university leaders to be educated about this challenge and equipped to provide more support.

My father was very frustrated by my brother’s difficulties; he assumed that my brother was just being lazy and not giving his full all. Doctors initially thought he might be manic depressive and gave him medication that probably had the opposite effect. But in his mid-20s, he was finally diagnosed with schizophrenia.

Frankly, I think a complicating factor was that we are Asian American. There is often a greater stigma in our society about talking about issues like mental health; we rarely discuss them openly, even with close family. I am glad that there is much more awareness today about the need to address mental health issues openly, but we still have a long way to go.

When my parents died, my sister Corinne took on the primary responsibility of being his caregiver, and I became a close partner, helping out as much as I could. I vividly remember the time when I started working in the pharmaceutical industry and learning so much more about schizophrenia and the therapies available; even in my experience outside of work trying to help him and navigating a fragmented system to get help, I found that there was no clear source of help; our family had to pay out of pocket for many of the things my brother needed, without realizing that there were many state and government services and subsidies for people living with serious mental illnesses. In fact, I recently came across managed long-term services and supports (MLTSS), a Medicaid program that facilitates the delivery of home health care, long-term care, and services. It was only a few years ago that my brother was also able to access community behavioral care centers, which provided him with ongoing socialization, group therapy, and other support services.

Overall, the situation is improving today, with caregiving and online communities coming together to share both resources and a sympathetic ear, but there is still a lack of available information, especially for families who are not very tech-savvy as more and more services become digital.

My brother’s story highlights the importance of getting mental health issues properly diagnosed and treated as appropriate as possible. When my brother was given the appropriate medications—in his case, long-acting injections—we saw a huge improvement as he became more social, talkative, practiced better hygiene, and was highly functional. He now lives on his own with daily supervision from my sister and local community healthcare through Medicaid and MLTSS.

I will always be grateful to my sister Corinne and my brother-in-law Wally for everything they have done and continue to do for my brother. Several years have passed, and to this day, it has fallen to them to act as his primary caregiver—from daily tasks like reminding him to bathe him, cut his nails, maintain his living space, and take his medications. I cannot emphasize enough how much of an impact having this daily presence in his life has had on him—something my sister continues to do. For example, even with access to assistance like food stamps, there is still a need for someone to take him to the grocery store or shop for him. There will always be a need for caregivers, and we should celebrate them. I also hope that caregivers prioritize taking care of themselves. I am reminded of the words of the late First Lady Rosalynn Carter: “There are only four kinds of people in the world: those who are caregivers, those who are caregivers now, those who will be caregivers, and those who will need caregivers.”

My advice to families struggling with this challenge is to talk to as many people as possible. Connect with others who have been in your shoes and learn what has worked for them. Fight the stigma of mental illness. It is heartbreaking for me to remember that in the early days of my brother’s diagnosis, our relatives came to our house and my family hid him in another room, perhaps because of a misconception about how to protect him. It is very important that we do not exclude those living with schizophrenia. Today, we are very open about all of this and will not allow the social stigma to have a strong hold on us.

By sharing our experiences openly and opening our hearts, we hope to make the journey a little easier for people like my brother and his family in the future and not be ashamed to share their experiences openly.

When I was first diagnosed with schizophrenia, my first reaction was, “No, that’s not me.” It probably stemmed from what I thought mental illness was. I was afraid I would be put in a straitjacket. I thought I would be isolated from the world. I eventually came to the conclusion that someone with schizophrenia needed to get help or it would end up on the local news.

My First Day

I still had my sunglasses on when I entered the small room. My platoon sergeant was behind me, and I noticed that the man waiting for us had a name tag that said “Doctor.” I was wearing my sunglasses because without them, my illness would spread. This meant that my reality would be established through extrasensory channels, and that one person could talk to another person without them being there.

Suddenly, while the Navy doctor was asking me questions, my platoon sergeant shouted.

“Take off your sunglasses!”

Which was exactly what I couldn’t do.

I slowly removed my sunglasses, accustomed to following orders. And so it began… The doctor could now hear everyone I had made eye contact with over the past few months. The doctor sighed. I was sure the voices had made contact with him.

I was given pajamas to wear and sent to a room in the psychiatric ward that I would share with three other people. This was a psychiatric ward. Never in a million years would I have thought I would find myself in such a place. I was terrified, but I accepted it no matter what.

My platoon sergeant had driven me from Fort Irwin in the Mojave Desert, California, to Balboa Naval Hospital in San Diego. I felt a sense of relief during the long drive to the hospital. I had to be on my guard at all times on my army base. I didn’t trust anyone around me there. I had made eye contact with all my fellow soldiers, and so the voices affected them as well.

A few things I experienced in the military may have helped me develop the powers I have now.

I was stationed at Fort Knox during basic and advanced training. One night, we were training in the M3A3 Bradley fighting vehicle, the Calvary reconnaissance main weapon. There were three of us on the same track. I think I was driving at my best. Of course, this was before my special forces got to me. Everything was fine until I got to the back of this vehicle and there was a broken seat belt in my seat, so I tied the two ends around me. The driver in front of me looked crazy behind the wheel. He hit a bump and I hit my head on a bar above my head.

I blacked out for a second. When I woke up, the ride was over. But the person sitting next to me was crying. I think he thought I was dead. He stopped crying when I moved.

The second incident was at Fort Irwin. I was in the field during a rotation and my team of soldiers were parked in a line.

It was getting dark and someone called me. I went and suddenly I noticed five men trying to wrap duct tape around my body. I pushed and kicked everyone who tried to tape me up. It took another soldier (from another team) who was bigger and stronger than me to knock me out. Imagine fighting for your life and losing. That was the beginning. I was the new guy. They also taped up another guy I came with, but not as bad. They didn’t tape his mouth shut like they did mine.

The experience split my soul into two realities. There was a daily reality and a purely mental reality. The reality I explained. The reality that motivated me to go to mental health so I could understand what this really was. Part of me thought this was another step in evolution.

I was later honorably discharged. My behavior at home was so erratic that my parents had to call the police. They took me away in handcuffs. It was a tough thing to get through, but I am grateful for that experience now because I got the treatment I deserved. I was finally on medication.

Antipsychotic Tangents

It got to this point…

The voices surrounded me like wasps in the spring.
Kissing women… the buzz of love
Beating in my chest.
Feast your eyes alone,
And hear God’s voice.
Whispers and tantrums,
Like bacon sizzling in your brain;
Finding rhythm in hallucinations
Depicting voices moving like a projector
Stopping and dispersing on a single green pill,
Creating a lonely circle.

This is my poem about schizophrenia. “It’s come to this” speeds the reader along. Sometimes the voices seem like wasps. Every sting is a voice. When I made eye contact with a woman, I would often feel a burning sensation in my chest, which I thought was because she was in love. The warm feeling was called the love buzz. Those who made eye contact with me could see me in their minds as “Lonely,” just as I could see them in my head. I also thought I could hear God’s voice. It was calming and soothing. Sometimes the voices were whispers and sometimes they seemed frantic. The voices that shared my brain could be likened to bacon sizzling in the background. The hallucinations in my mind raced with a rhythm like boom, boom, boom. Some voices could act as a projector, helping me weigh my delusions.

Stopping or perhaps dissolving into a green pill, an antipsychotic. When the medication starts to work and the voices and delusions subside, I think the person living with schizophrenia feels alone. They have been dependent on them for a long time and the voices probably make them feel important. I hope they don’t stop taking their medication.

How Can I Help My Family and Others Understand Schizophrenia

I am not a mental health professional. I have great respect for the profession.

I recently read an article about psychiatry. The first sentence describes how difficult it is for a person to accept that a loved one has a psychotic disorder.

I have never thought much about my family. How do they carry this burden? I am sure that part of this is whether the mental health consumer has a roof over their head or whether they are taking their medication. I am sure my parents would want me to communicate how I am feeling and whether I am taking my medication. They would also want to know that I need to be alone when I am feeling anxious, just as I would want to know that it is okay to take a few minutes to myself.

My family would also want to know that I am taking good care of myself. Your job as a mental health consumer is to tell your doctor that you are okay or that you have symptoms. You also need to continue taking your medications.

That sentence from the article I read may help others. If someone doesn’t understand what it’s like to know someone with a mental illness, ask them, “What would happen if your father, mother, brother, sister, husband, or wife was diagnosed with schizophrenia?”

Their world as they know it would be over. Many people don’t understand schizophrenia and they may not know who to talk to. My mother searched the internet and tried to find everything she could about it. There are different groups that a loved one can go to for help or even empathy.

If you don’t understand schizophrenia, just try to understand your family and friends. What are they going through? It’s important to know the simple truth that it’s no one’s fault.

If I were to describe schizophrenia, I would describe it this way: Schizophrenia is a struggle with false impulses. They just come to you. You have to constantly struggle with the unreal.

Sometimes I go to Arby’s. I order through the drive-thru. Monday is roast beef, Tuesday is turkey, Wednesday is roast chicken, and Thursday is meatloaf. There are also four sides and cake. I tell them what I want on any given day and immediately I think they’ve spit on my food or done something else. I look around the window to see if I can catch them red-handed. Nothing. I pay, get my food, and say thank you.

Schizophrenia is when you have a delusion or just a thought and don’t react because you don’t know if it’s true or not. Add stress to it and I can’t work. I can’t live a “normal” life because of it.

What is a “normal” life? When you have a mental illness, you have a rough definition.

Me, Myself, and I

Last night, people were walking up and down the stairs of my apartment building, trying to be quiet. I thought they were talking about me.

“Jason lives there.”

When I experience something like that, it’s very hard to think rationally. I get carried away.

When I hear voices talking negatively about me, I take a deep breath. Then I catch myself in the moment. Are people really talking about me? If you do, you’ll probably find that everything inside and outside your head is silent. Another way to cope is what my therapist told me, to check for evidence. I have a peephole in my front door. When I think something’s going on, I look through it. I look inside, and you know what, there’s no one there.

Think about this: If someone were talking about me outside my door right now, wouldn’t they whisper so I wouldn’t hear them?

When you think strangers are talking about you, you need coping skills.

If you have schizophrenia or any type of mental illness, you need to be in tune with yourself. You can be your own therapist or doctor without a psychiatry degree or a doctorate in psychology.

Being present in the moment is about being self-aware. Use your senses, listen, look through a peephole or window. If you’re on your medication, you probably won’t hear or see anything. Most of the time, you should know that people are minding their own business. They have their own worries and obligations. They probably have nothing to do with you.

My Stages of Recovery

The Stages of Recovery can be viewed as a checklist or a way to see how far you’ve come. A patient, doctor, or mental health professional can benefit from using it. I believe most patients go through these stages of recovery. It’s a tool that helps you see where your recovery begins. These stages can vary. They don’t have to be in order, but I think it’s a tool that is used to help a patient go through the work on their own.

Self-Awareness

I realized something was wrong in the military. I referred myself to mental health. I returned home with horrible symptoms, voices and hallucinations because I hadn’t taken my medication. I didn’t understand what was going on.

Getting Help

My family reported me. It’s better to come to your own conclusions. I was taken to the hospital and decided that if I was going to get help, it would be here.

Staying Stable

I found the right medication at the hospital. I decided that I wasn’t going to go off my medication.

Acceptance

At this stage, I accepted myself at a bar. I didn’t want to stay silent, but I talked to other people. I told other people at the bar that I was a disabled veteran and why. I didn’t know why I should be ashamed of my diagnosis. At this stage, I realized that some people might not accept me. I realized that I needed to test the waters in any public or social setting. I asked myself if I should tell this person, if not, there would be other things to talk about.

Protection

At this stage, I tried to do everything I had to do. I quit drinking and smoking. I took my medication. I was taking antipsychotic injections. After telling my therapist and doctor about my symptoms, my doctor suggested I take a different 2-week injection instead. I also take an oral antipsychotic. Sometimes we do everything we need to do, but we have symptoms. We have to protect. We can’t give up. We have to be aware of our symptoms and if they don’t belong, tell your doctor.

Accepting your mental illness or who you are can also be part of self-awareness. All while protecting and doing what you need to do.

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.”