What it's like to live with schizoaffective disorder

Jonny BenjaminI was diagnosed with schizoaffective disorder almost 6 years ago now when I was 20. I've learnt to manage it to a degree now but it can be incredibly difficult to live with. The paranoia, intrusive thoughts and delusions can be a daily battle at times. It can be a very lonely and exhausting battle too. But for me the biggest and toughest battle of all about having schizophrenia is living with the stigma attached to it.

Most of us who have schizophrenia are not violent or dangerous and yet this is the only thing the public seem to be constantly told about the condition by the media. Take The Sun's recent front page for example: "1,200 Killed By Mental Patients."

In response to that and all the misconceptions out there about schizophrenia, I decided to create this short film to raise awareness and understanding about what it's really like to live with the illness.

There's a culture of fear that exists around schizophrenia now and it's time to show people that those of us with schizophrenia are really just human.

It's time to stop the stigma, it's time to talk.

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Comments

Brilliant video

Although I have had depression on and off myself for years, I've always been absolutely terrified of schizophrenia and what it might mean. I had to psyche myself up to watch your video! I thought it was brilliant and really moving, and it's given me a better understanding of schizoaffective disorder. Thank you!

Excellent response Lisa :o)

Hi Lisa That's fantastic and is exactly what Jonny wants to achieve- changing attitudes- it's about people being willing to learn something new- not to keep generating the detrimental misconceptions over and over again. If we can all suspend our ignorance and keep an open-mind. Learning is such a great experience. And I want to say a big thank you for taking the time to watch Jonny's video and having that willingness to learn about schizoaffective disorder. In doing so, you've come to know a bit more about a very wonderful person! Wishing you all the best Mel

My friend, my hero, my inspiration

As you know, my life has been enriched so much by Jonny B- I am continually inspired by his dedication, passion, altruism and creativity- and my goodness, doesn't this video capture his spirit so well! Jonny, I am delighted to see this on the TTC website & really believe in you and your message. This is education with integrity and persistence of this kind WILL lead to social change- just like it has in with regards to racism and homophobia. It angers me to see the leniency towards these disgusting misconceptions being generated. Your video is a powerful weapon, but it is also a gentle hug 4 those run down with the effects of stigma- it's a high five to all those fighting in our army against discrimination and it is a a beautiful introduction to your endearing and amazing persona- I'm so very proud and will continue to support & cheer you all the way! Love and best wishes to all the dear members of Time To Change & thank you for hosting this for Jonny Love Mel XXXX

Jonny's Video

Really nice video. REALLY good! I'm a bi-polar TV producer/director/filmmaker normal human being too ;-) Make more videos Jonny!

great video

i really liked your video. i am a partner and carer of someone who has schizoaffective dissorder. there is too much stigma and it is time to change and talk.

Thank You

What a brilliant video, thank you for sharing. I want to hazard a guess and say we are both in the same neck of woods, location wise. Though I'm going through BP and depression apparently...well that's what my labels say....to those that know me, I'm just Caroline.

Video

Your video is an eye opener. Thank you for making it! I do think the media is good at spreading any kind of fear among the public when it wants to and schizophrenia is one of them. I am a carer for my sister with schizophrenia and she struggles with this condition which can be heart braking at times...She is not a violent person at all.

AWESOME VIDEO

Hey Jonny, I thought your video was absolutely tremendous. The analogy you made saying, "We're all just human too," was so simple, yet at the same time, so powerful. Amazing message. Keep up the great work! I have bipolar disorder, and try my best to fight the stigma through videos as well. Please check out my webpage, blissify.org. You're an inspiration. Logan

The Changing Face of Mental Illness

This is a brilliant way of showing everyone the true face of mental illness and changing the misconceptions of it. We are ordinary people who just happen to have a mental health condition. The trouble is, people can't always see the person behind the condition. We are portrayed in the media as dangerous and out of control. This video clearly shows this is not the case. Great video! :D

Thanks Jonny

Your video was really fascinating and gave a good idea of what it's like to live with schizophrenia- bloody tough at times I imagine. Thank you for sharing.

Jonny, you are fantastic

Thank you for creating this and sharing this - it is brilliant and much needed.

living with schizophrenia

Hi there, i felt i had to comment on this subject because i have lived with a family member who suffered from schizophrenia, my elder sister. She was diagnosed when she was 18 i was a child, there was quite an age difference between us. She used to hear voices and think that people on the television were talking to her and she suffered severe paranoia. She was on strong medication ie Lithium, Mogadon and she had her share of electric shock treatment. She was in and out of Parkside Mental Hospital all her life. I can tell you that the stigma was that bad the rest of the family wanted nothing to do with us and mention schizophrenia and people get scared. She wasn't violent just very scared most of the time. If she felt the illness overwhelming her she wanted to go back into hospital where she felt safe. I suffer with depression myself and everyday is a struggle. I'm on medication and waiting for counselling myself. People who suffer from any mental illness cannot help it. It's an invisible illness that people can't see therefore don't understand. People with depression are very scared at times, they don't choose to feel the way they do, feeling suicidal sometimes too. The carry a lot of guilt and self blame. Anyone that doesn't understand mental illness would do well to go to the library and read the self help books on prescription, it will help you to understand it. I read some of these on cognitive therapy and it has taught me how to think differently but it is always a struggle. People with mental illness need your help and understanding not to be ridiculed and laughed at

Fab!

Great video and really helps me to understand what it's like. Blue suits you :-)

Video

Go Johnnie. Inspirational

Jonny Benjamin

I found his short film informative, thought provoking and enlightening. I wish him well in his recovery. As a Mental Health Nurse it is good to see positive features on Mental Health. Well done Jonny and Time to Change you are awesome!

love it

Great video, really inspiring! x

Spot on

Enjoyed your video. It pretty much sums it up. I've lived with the condition since 1990 when I was 17. Those symptoms you show in the video are so accurate and I can remember experiencing them all in my own way with intensity. In recent times I'm mostly affected only by the intrusive thoughts which aren't as bad as they used to be, a bit less dominant than they were. That and anxiety and depression. I got my first job in 2010 and still hold down a full time job to date. It's not exactly what I envisioned I'd be doing back in the nineties. I feel like I'm starting out after a gap of 20 years. I think of myself as 20 instead of 40, and that's not the schizo in me talking! I wish stuff like this existed when I was at my worst. Then it was a case of fear of speaking out because of judgement from others. Still the same to some extent today, but websites like these weren't around then. I lost soimething like 15 years because of fear of what people might think. Like you say and the campaign says: It's time to stop the stigma, it's time to talk. 17, exam pressure, hospitalised. 'Adolescent crisis' 21, university exchange, weirdness, insomnia, hospitalised in Buffalo, diagnosed, Schizophreniform Psychosis. Billed $15000 for the pleasure. Took legal action against insurance and won out of court settlement. Follow up diagnosis include, Schizophrenia, and Schizoaffective Disorder a few years ago. Absolute best wishes to anyone living with this. It makes life rather challenging.

Spread the word!

This is really enlightening! Thank you. The more people know about this, the less alienated we can all feel from one another. The little shack-out at the end over the background falling made me lol! <3

Jonnys Video

Brilliant. I hope lots of people watch this and learn.

Jonnys Video

Brilliant. I hope lots of people watch this and learn.

Inspirational

Good work man, I've suffered all my life with bipolar and had several episodes of drug induced psychosis which left me with life long paranoia and a lot of general mental health issues which culminated in several suicide attempts, thankfully fifteen years later I am still here, so is my paranoia mania and depression! so are the bad thoughts to hurt myself when I get stressed, but I deal with it, and I talk about it! Stuff like this is inspirational as it lets us know other people are out there that feel like us that have these conditions!

I loved this video. Good on

I loved this video. Good on him! I'm not scared of people with schizoaffective disorder, and never was; nor of those with any other form of schizophrenia, but it's always great to see people with mental illness standing up and proving to the world that we're not so different at all. The video itself was cleverly done, too. It's made me want to do one about living with BPD.

thanks

thanks for trying to make us aware of what life is like for you. ignorant people will not ever understand or have compassion for it but i suppose that is their own mental illness. :)

I really enjoyed this video,

I really enjoyed this video, thank you for making and sharing this Jonny. Very brave of you to do. Matthew

Bi-Polar Me

I have been diagnosed for nearly 30 years. Many friend do not know. Some tell me their problems and tell me that I have the best advice and I am so level headed and insightful. I have told a few friends about my condition; they look for symptoms. Once I act out of the "normal" that they have assigned to me, they say, "oh, I guess you ARE bipolar. It is not fun, I keep it to myself now. I take my meds and I indicate that I am having a bad day. Some days I stay in bed all day, I am afraid that I might act out (I can often feel a manic cycle coming on). Many people do not understand but I no longer feel a need or want to discuss. I like my life mostly. I never judge people instead I treat them with compassion. Wish more people would do the same.

voices

Do you actually hear voices or is that just you talking to yourself?

Thank you for making the video!

I can't thank you enough for making this video. It was an enormous help to understand what is going on inside of my 28 yr old son's schizoaffective mind. He is also bipolar and like you, was diagnosed at age 20. Like you, he too is frustrated with being stigmatized by the general public. He once told me that he wished that his illness was visible on the outside so that people could see how he feels on the inside. He is OK - sometimes. And he is sick - sometimes. And it breaks my heart - all of the time. I admire your strength and bravery in making this video. Good luck to you and I hope there will be a cure for this in our lifetime.

Spot On!

My 38 year old son has schizoaffective disorder. We have been together in the community on a number of occasions and what was portrayed in this video is what his reality has been. This, coupled with an addiction to methamphetamine has been heartbreaking for him, his sons, and our family. His IQ is higher than anyone I have ever met, yet, he struggles with fitting in with the world. He is in and out of prison...feeling like the biggest failure because he can't seem to get a grip. I wish there was a clear answer...I know that being educated about mental illness and addiction is a start.

Spot On!

My 38 year old son has schizoaffective disorder. We have been together in the community on a number of occasions and what was portrayed in this video is what his reality has been. This, coupled with an addiction to methamphetamine has been heartbreaking for him, his sons, and our family. His IQ is higher than anyone I have ever met, yet, he struggles with fitting in with the world. He is in and out of prison...feeling like the biggest failure because he can't seem to get a grip. I wish there was a clear answer...I know that being educated about mental illness and addiction is a start.

Amazing short video

What a wonderful short film. Thank you so much Johnny Benjamin. Looking forward to more from you. My loved one humbles me daily with her strength, courage, and huge heart. "It's time to stop the stigma, it's time to talk."

Been there

Great video. I, too have schizoaffective disorder and yes, the stigma is terrible to live with. But more than that I feel the side effects of my meds is even worse. I went from 132 pounds to my current weight of 251. I can't date or work(hoping that will change) but I have managed to complete a degree program (one class to go!) in what else? PSYCHOLOGY.

Jonny's Video

I have Schizo Affective Disorder and I've only met one other person with the same illness so I was so pleased to see this video. It very accurately reflects what life is like for us with the thoughts, paranoia and hallucinations, let alone the depressive side to it too. Thank you so much Jonny for making this video and showing that we are not all homicidal maniacs dragging our knuckles along the ground. I am very happily married with 4 beautiful daughters and will be starting an OU degree next February. Schizo affective disorder is what I have NOT who I am.

schitzophrenic vidio

Hi, just want to say, well done for the small example of what it is like for someone with schizophrenia , there is a lot more to the illness than what you have shared, just wondering why you haven't mentioned your response, it is all about you listening and coping which is good but what about when you don't know if what you are listening to is you. What about the bad voices- who hate you, what about when you don't know what breakfast is, what about when you run and panic with fear, what about the night mares, what about when words go in and get twisted, what about the self judgment, what about when everything is your fault and your body doesn't react the way you want it to what about the way you notice people looking at the way you react to things you see!, and so on....so much more to the illness but very good small example of a few parts of the illness, wish i could inbox you, Lorna.

Who hasn't had overwhelming

Who hasn't had overwhelming unwanted voices, whether they have diagnosed mental illness or not? Mine is usually 'push the granny out the way, push the granny out the way' and i'm like 'GO AWAY'! :)

Normal

Hello, Johnny My name is Trista and I have an amazing brother who also suffers with schizoaffective disorder. He is a big loveable guy who at times is difficult to communicate with. He also is not violent and would never hurt anyone purposely. Unfortunately, the media has put a terrible stigma on this disorder and people tend to believe what is on the TV. We need to continue to educate them on the truths behind mental illness. I think your video is brilliant. I wish that there were move videos like yours out there. I wish you the best

Eye opening video - Well Done

We've posted this to FamilyLine's facebook page as we think it is something as many people as possible should see. Well Done Jonny for having the bravery to put yourself out there for public consumption and public education on the condition.

About Time!

Thank you so much, Jonny, for your video. You are brilliant for putting yourself and SA disorder out there. I SO WISHED my brother Dan had had the support from wonderful Time For Change and Rethink when he had the same disorder. Sadly, he's no longer here and even 10 years on, I miss him. I'm so refreshed to see how slowly but surely, mental illness and schizophrenia is being talked about.

Common ground

I was diagnosed with schizoaffective disorder at the age of 18. You can't begin to imagine how happy I am right now to see this video. First, it's a great window into the life of someone living with this disorder. Second, it's a complete relief because now I can stop trying to explain what I experience; I can just direct friends who care to this video! Third, it's always nice to see someone who I can see so much of myself in and the support they are receiving. I have my own blog about living with schizoaffective disorder and, although not well kept up, I am in a different way trying to deal with the stigma of mental illness by sharing how my life is not terribly different from everyone else's. Thanks for sharing!

thank you!

Jonny, thank you so much for being brave enough to share your illness in a way that helps people to really understand what it's like. That is one of the most frustrating things, I think, is that it is so hard to explain the experience of mental illness. You have captured it brilliantly. I hope you have the opportunity to make more. peace, Kathy

I can understand

I've been in secure psychiatric units with paranoid schizophrenics that have not been handling their conditions properly and I have witnessed some very scary things. I can understand the fear surrounding schizophrenia. But it's also good for people to realise that the diagnosis does not automatically mean that people are dangerous or violent.

Thank you.

I will share this with my students. I am so grateful to you for your grace and courage!

Jonny's Video

Hi there Jonny, Thanks for the video it has helped me understand the disorder better, I thought the video was great and I now have a better understanding of this mental illness. Joan

Brilliant video!

Thank you so much Jonny for posting such a thoughtful, positive and honest video. Today I walked down that exact same road that you show in your video (love living in this area!) with a prescription for a change of mood-stabilising medication in my bag, feeling thoroughly fed-up. However, I feel quite uplifted after watching your video - your outlook is inspiring. Really liked your portrayal of some of the symptoms you experience and your comment about how you don't act on them and other people probably can't even tell that you're experiencing them.

Perfect. Really, just perfect.

I've shared this on our Twitter and Facebook accounts to ensure tht as many people as possible see this video. It deserves to go viral. Well done Jonny, you've made an excellent piece of art. https://twitter.com/SchizophreniaRI https://www.facebook.com/SchizophreniaRI

Great example

I pleased to see such a thoughtful and articulate video, hate to say its brave of you but it is. As a former emergency department nurse and having a close relative with several mental health diagnose's my frustration at the lack if progress in mental health care consumes me. Most people will have at least one mental health 'episode' in their lives unlike most other high profile areas of health, why are we so prejudiced? If the prejudice would just stop maybe research would increase and dare I say it the dots would join up for self medicating (alcohol, recreational drugs i.e. addiction) and inadequate resource and treatment for mental health sufferers. Sun readers could probably do with a bit of help too!

As a Mom

As a Mom I can relate to some of this - My son was 12 when he was diagnosed schizoaffective -Schizophrenia and mood disorder. Challenges abound and with support of all kinds it is manageable. Thank you for you story and efforts. <3

Thank You

Thank you for having the courage to share and using your creativity to get the message across in a way that people can relate to.

BBC Article.

Hello, I'm grateful for your story and your openness about this illness. I have suffered from metal illness for the last 8 years and I too, became particularly paranoid due to the Truman Show to the point of checking behind mirrors for cameras and not being able to use my laptop or mobile, funny, but so not funny! THANK YOU. Tom.

Thank You

I was diagnosed with schizoaffective disorder back in September. It has been a bit confusing for me. Like what does it mean. Is the way I am thinking connected with my illness or am I just being a freak. This video has helped me a lot. Helped me understand me so thank you :)

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