My story of having schizophrenia over the last 45 years

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Some people claim they have “mild” schizophrenia, I seriously doubt that is possible. I’ve met and lived with, worked with and been hospitalized with a number of other schizophrenics over the course of my 45 years with this disease. I’ve heard some of their stories and I’ve observed them and I have not seen one of them who had it easy with this disease. I have not run into anyone who can say their disease was mild. I guess there’s the odd exception

But anyways, I can give you a brief part of my history and hopefully you can get something out of it. And by the way, I was diagnosed with paranoid schizophrenia in 1980 when I was 19 so I have been dealing with schizophrenia for almost 45 years.

Anyway, I went into my first psyche ward when I was 19. I was in bad shape. After two weeks my parents found me a place to live which was a group home for schizophrenics. I went through hell there, I suffered a lot, every minute of every day for about a year. I was 19 and I had no money, no girlfriend, no friends, no car, no school, no sanity. And that was true for the entire year. I had weird symptoms. It could take me an hour just to get dressed in the morning in a pair of jeans, a shirt, and socks and shoes.

I spent months sitting alone in an old dirty chair out in the backyard fighting to keep my sanity. Every day I felt like I was going to go stark raving mad. I felt hopeless, suicidal, lonely, crazy. I did not improve at all for that year; I saw no hope, no light at the end of the tunnel. I saw no end to my misery, no sign that I would ever get better. But I survived.

After spending a year there I moved back into my parents apartment. I lasted two weeks before they had to put me in a psyche ward again. From the psyche ward I was put in a locked psychiatric hospital for 8 months, where I stayed with a 100 other patients who were in crisis too. I got up at 8:00 a.m. for breakfast every morning and after breakfast the screaming started. After breakfast all my fellow patients for the next 8 hours would be screaming, arguing, cussing, threatening each other. And this is how it went until dinner time, every day of my stay there. They put me on medication there. It didn’t help me get better but I think it stopped me from getting much worse. As many of you know it is not unheard of to try many medications before a person finds the one that works. And so I’ve been on medication for over 43 years.

And my symptoms were horrible for 8 months, it was like torture. But then I got out. I moved into a really nice, clean, safe, group home in a nice neighborhood. Things started looking up. My symptoms became more manageable and I started going to a day program 4 days a week. After 9 months in that home after a series of small steps, I got a job. I was 22 years old. I still had nothing but at least I was in a nice environment. I stayed at that job for four years and I was actively psychotic for a lot of that time. Well, eventually I got a car, a house to live in with two or three other people. I got a little money, a little power and control. I got pretty stable. I was doing good.

Then I got addicted to crack cocaine. I was addicted for four years and I went through the typical drug lifestyle. I was the victim of violence, I got robbed a couple of times, people conned me and I conned them. I often risked my life and my freedom to get my drugs for four years. Take my word for it, my addiction was not pretty. But I got clean in 1990 through AA and in the last 35 years I have not touched alcohol or drugs.

Well, I’m 64 now. A lot has happened since my disease started. I’m looking back on being employed almost steadily, albeit mostly part time, for the last 43 years. I got my license in 1997 and I have owned and driven a car since then. I went to college and graduated two years ago and even attended graduation ceremonies. I lived on my own for 20 years, usually renting rooms in peoples houses. I lived by myself in a studio for 6 years while working and taking online classes. In those 6 years I lived like anybody else. I shopped for food, I cooked, I kept my studio clean, I went shopping for shoes and clothes when I needed them, I made and went to all my appointments with doctors or Social Security. I even had my own cat, lol…

But my recent story is a little bad. in 2015 I was renting a room in someone’s house. I was working, taking classes. But then my mom died. I was under a lot of stress and my mom’s death tipped me over the edge. I lost my housing, I couldn’t drive, I had to drop out of school and I had to take two months away from work. and I had to go into the hospital for two days.

I’m just telling you this to illustrate that even when you’re doing OK with schizophrenia life is going to throw you an ugly curve ball now and then. Life does not always go smoothly. I don’t want to paint an unrealistic, rosy picture of my life.

Bad stuff happens to everybody, no one goes through life unscathed. No one. But life isn’t all bad. I’m back at my job, I got a 2012 Volkswagen car that runs well, my living situation isn’t all I would like it to be but it is not that bad. I slowly got back on my feet, I’m getting ready for another round of life’s ups and downs.

And as I write this, it’s a nice night tonight, I’m relaxing and looking forward to tomorrow so I can get up and go for a walk and maybe over to my sisters house for dinner. I really do hope someone gets something from all this. I can’t solve all your problems, I can’t guarantee how your loved ones life will go but I hope I am instilling a ray of hope into your life and as you can see it is possible to make great turnarounds in life.

I came from the bottom of life with nothing going for me, but look how things changed. Most people with schizophrenia show signs of improvement as they go through life. But sometimes there are no answers and you just have to endure the pain and agony and put one foot in front of the other and keep trudging along. There is no quick fix to our problems and you don’t get better overnight. Everybody has different problems and no two cases of schizophrenia are exactly alike.

Some of our symptoms may get better some may not. But we just have to keep trying like everybody else. I don’t want to give false hope, I’m very lucky to do what I’ve been able to do. But other people besides me have suffered and then made dramatic comebacks. You can’t predict the future. Many people improve, some don’t. Or they may improve a little or they may improve a lot. Who knows? But it’s worth sticking around and try to let people help you. Good luck.

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Hope my son gets better. So sad, that every time he goes off his meds, he changes, his personality, thinking, keeping his room organized. I get it, and don’t push him, can’t imagine how it is for him and he didn’t cause it……

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Thank you for sharing your story. It does provide hope. No one has a guarantee on what life will look like from one day to the next. Life throws us a lot of curve balls. It’s just refreshing to hear how you still continue to push through and are navigating life even with the schizophrenia. God Bless and take care!

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Thank you for telling your story publicly. Our son has been going through homelessness for the last 7 months .We don’t know where he lives. It’s a terrible disease schizoaffective disorder.

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Thank you for telling your story. I’m sorry for all the tough parts in your life. And I admire your honesty and perseverance. Take care.

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Thank you for sharing your story. Your perseverance during the extreme episodes of your illness is a sign of your strength, and desire and commitment to treatment. It"s clear that you knew something was very wrong and, through all the challenges, worked hard to get better. You continue to work hard managing very challenging symptoms.

When my daughter was 15, she was diagnosed with schizoaffective disorder. She, too, willingly tried a number of med cocktails and treatments. Honestly, in the beginning, we thought it was hopeless and she would be stuck in that terrible psychosis and mood instability for the rest of her life. She was traumatized by her mind betraying her and the multiple, lengthy hospitalizations. Her meds still need adjustments and she still has difficult episodes. Thankfully, she has an excellent and responsive psychiatrist.

Fast forward 12 years. She got her GED, her driver’s license, has had 3 good part-time jobs, built a social life, and is moving into a subsidized apartment. She works part-time, with ambitions for more, but part-time seems to be the right fit. Her success has been based on her setting her own goals. Earlier this year, she had to miss 2 months of work, but she kept going.

Your courage and hers continue to impress me. I’m so proud of her. Both of you show such courage, grit, and determination; it blows my mind.

Everyone with this illness faces intense suffering. Somehow, you both have hung onto hope for better days - and it has served you well.

My warmest wishes that your life continues to be stable and show improvements.

Thank you, again, for sharing your story.

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I also want to thank you for posting your story. Reliving it this way had to have been incredibly hard, but it makes your story that much more of a gift. The way you persevered through each hardship, and never gave up, is to me nothing more than heroic.

As a caregiver, seeing how schizophrenia can play out over a lifetime, is more helpful than you can imagine. If I didn’t before, I do now, to never give up. Crises or setbacks do not equal unrecoverable failure, and that never giving up can be its own reward.

My takeaway is to just keep swimming.

Thank you for your story.

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Thanks to everybody for all the positive feedback! It sounds like I helped give hope to some caregivers, that makes me happy.

I am very lucky that I had a family who never gave up on me and helped me as much as they could and included me in everything they could and treated me like a normal person. So it’s good to see such supportive parents, sons and daughters Etc on here who stick with the person they know in their life who has schizophrenia and help them too.

My life is pretty uneventful now, when I first got sick it seemed like a new crisis every other day. Now, I’ve got my job that I go to three days a week that I’ve been at 14 years and I go to all my doctors appointments and take care of myself but my life has slowed down a lot, as I have (I’m 64 now).

I’m in California and my only living family members are my sister in Oregon and my other sister in Mexico but I can call them almost anytime to chat. I live alone and prefer it this way. Maybe I’ll make a friend in the future but I choose to be alone now. I get my socialization fix at work and with my therapist, psychiatrist, and my two case managers. I’m afraid I’m not the best example of how to be social with schizophrenia; I’ve had friends in the past but don’t really miss them for now.

Like I said, I take care of myself and don’t bother anybody and most people leave me alone though driving in traffic in California is hectic to say the least. Many of you were very kind in your answers, I appreciate that and I’ll be around here and hopefully I can offer words of encouragement and give support here too!

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Thank you for sharing your story. We are working so hard to help me son and you give me fresh inspiration. God bless you.

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Thank you for sharing your story, its always insightful to hear how it is for the individual suffering with the illness. Its a difficult and long road for all parties involved, i appreciate your honesty with keeping things in perspective and to not give false hopes for unrealistic outcomes. Thank you once again, you should be proud of yourself for trudging through it all.

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