My Life With Schizoaffective Disorder: Jonny Benjamin | OTE Podcast 31

Jonny Benjamin talks emotionally about feeling like he's in the Truman Show due to a type of schizophrenia called schizoaffective disorder. He’s passionate about mental health and how we all need to talk more openly, and you can find the charity he founded, Beyond, on wearebeyond.org.uk. He’s also created a mental health festival for schools called Now and Beyond.
#mentalhealth #schizophrenia #trumanshow
Jonny links:
We are Beyond: wearebeyond.org.uk/
Now and Beyond: wearebeyond.org.uk/now-and-be...
Website: jonnybenjamin.co.uk/
Find Mike campaign: www.rethink.org/aboutus/what-...
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I’m honoured to be joined today by one of the UK’s most impressive speakers and mental health advocates in the form of Jonny Benjamin MBE, who made headlines after sparking a national campaign called Find Mike - with the goal of tracking down the man who talked him down from a bridge. Jonny talks candidly about his own experience with schizoaffective disorder, which has led to him hearing a voice in his head that used to take on the form of an angel, before becoming the devil.
He’s passionate about mental health and how we all need to talk more openly, and you can find the charity he founded, Beyond, on wearebeyond.org.uk. He’s also created a mental health festival for schools called Now and Beyond.
Jonny also tells me how his relatively conservative Jewish upbringing made it harder to talk about his issues, while also feeling he had to keep his homosexuality secret. We also spoke about fellow schizophrenia sufferer Elyn Saks, whose Ted Talk you can find here.
Follow me on Twitter and Instagram, both andrewgold_ok, and have a browse of the different perks you can get from a membership on patreon.com/andrewgold
Chapters:
0:00 I've been lucky
2:31 The stigma of mental health
3:50 Is schizoaffective disorder a spectrum?
7:25 Moving away from traditional psychiatry
10:45 Link - creativity & schizophrenia
11:47 I believed I was in the Truman Show
15:14 Find Mike
22:00 Advice for parents
24:43 Patreon Caller Question
28:18 Jewish Chat!
29:37 Coming out as gay to conservative family
31:45 Relationships now?
32:54 Pursuit of perfection gay community
35:21 Elyn Sacks
41:43 Exorcism (Voices inside & out)
43:29 Schizophrenia in movies
50:21 What is an MBE

[@AndrewGold1]

Have you suffered with a similar condition? Did you enjoy the podcast? Let me know here!

[@duaneglower8857]

Yes & yes. Mental illness is defined as such due to it being the minority. The last I was aware mental illness was on the rise. Here's the question of the day. Once 51 plus percent of the population has said disorder, who has psychosis then (?)

[@AndrewGold1]

@@duaneglower8857 Intriguing!

[@duaneglower8857]

@@AndrewGold1 perception my friend. Have a good one man!

[@duaneglower8857]

@@AndrewGold1 truthfully that was the outcome of a days worth of thought after hearing "how do we break the circle" from people that create them...

[@mckennasweda3614]

I suffered through many events but it all became more bearable 🐻 when whatever is controlling everyone put the idea in my mind that we are being controlled. Mentally and physically and that like Eckhart tolle says we really are just the observers (though I would include experiencers) and it isn't just in our heads. Everyone has a part to play and when you no longer need to suffer or look crazy that is when your episode or event comes to a close. Mine ended in the psych ward thinking I had been poisoned and while sitting on the chair waiting to die I asked if I could hold a nurses hand. In my "delusion" I died and all of a sudden the worst of the experiences came to a close. When we are made to suffer in our minds it is very much real and I dislike that we are made to write it off later as not being real when it is a form of electrical torture. I had the same Truman show experience. It even popped up on my phone without clicking on anything at the time. Truman show/gang stalking/ hackers/ drones using frequencies/ everyone working in tandem hiding something from me. I enjoyed your podcast.

[@k.hotting4851]

My mother has schizo-affective disorder. It had a lot of impact on my childhood. I found out early that when I talked about it people would react blunt or awkward. That made me very careful to open up to people and it made me very lonely. Still to this day I'm careful about talking about it to anyone. Thank you for bringing attention to mental health issues. The taboo needs to be taken away!

[@TempermentalTart]

Same…have you or have you considered joining a support group?

[@ZadenZane]

12:46 there's a famous book by Kay Redfield Jamison called "Touched with Fire" which examines the link between mood disorders and creativity. She researched the life histories of accomplished writers and the rates of mental illness were really high. The poets were the most disordered. About 50% had a serious mood disorder, mostly bipolar disorder. By the way he's really lucky to have got any psychiatric treatment at all. I think he must have been in hospital a few years ago, because nowadays there are barely any hospital beds left for mental illness. A few years ago you could present at the mental hospital and get an assessment. Now (according to a friend who spent years in the mental health system) you have to go to A&E at a general hospital where a junior doctor non-psychiatrist assesses you, and will usually tell you to go home and wait two weeks for the home treatment team to get in touch. That was her experience anyhow.

[@kathyotoole4608]

I was given antidepressants for my fibromyalgia. I stopped taking them because while I was no longer depressed, I no longer felt any happiness either. This man’s story is heartbreaking. I hope he lives a long, healthy, happy life!

[@Katefibroninja]

As a fibro suffer as well that’s an interesting take on anti depressants

[@wingedinfinity6715]

It is a known written rule in the United States that a patient not be prescribed "anti" depressants longer than 6 months and also not more than one psychotropic drug at a time, yet many doctors do not follow that rule. Hence all the problems. God has shown me that everything is Spiritual in nature. Therefore it must be that in the spirit realm is the solution. Therapy and Spiritual connection with our Father in heaven is the best combination, but the problem always is a disconnect from our divine source of Love.

[@kathyotoole4608]

@@wingedinfinity6715 I hope that works for you. I don’t have the same beliefs.

[@wingedinfinity6715]

@@kathyotoole4608 It's not a belief, those are facts that I presented. But it is your choice to refuse the truth or not. God Bless you.

[@pickle9753]

One of my truest friends, who I knew very briefly.. had a form of Schizophrenia.He tried to self medicate with meth and got very ill, very fast. I knew him less than a full year before he drove into a semi. The last day I spent with him, he was coming down from a meth trip when he showed up, terrified, talking in Tongues, and on his knees in my driveway screaming at god and “the angels” to “kill him already”. He kept saying me and the angels were “in on it together to try and stop him from doing meth.” At that point he was scaring me (I’m so grateful I didn’t tell him that, but my biggest regret will be not hugging him) and I asked him to leave. I told him (he already knew my rules of not allowed at my house on drugs) to come back when he is sobered up, and that I will help him get some proper help, and That I love him. I live alone and I didn’t feel safe, so he had to leave. I was grateful he respected me and my rules. I didn’t know what to do. I messaged his brother for “serious medical help” but I was brushed off and told “he’s all methed out so he’s pretty much been put on the back burner”. He gave me a necklace with a diamond heart on it, and that gave me the worst feeling in my gut. He left, and I had no way of getting ahold of him after that and had to wait for him (he didn’t have a phone) to show up again, usually around every 30 days for a day visit and to spend the day helping me with what ever chores I needed help with since my back is bad and I have fibromyalgia. He was always so helpful and sweet to me. He strongly believed in god, and the bible, and quoted from it often. I never seen him again after that. His brother contacted me telling me he drove into a semi not far from my place 26 days later. He had no drugs or alcohol in his system at the time of his death. He was only 27 when he died.

[@pickle9753]

I have some ptsd symptoms from the experience and loss

[@HappyQuailsLC]

​@pickle9753 I'm sorry that no one replied. This is a harrowing story and I hope you have good friends close to you whether locally or online who can relate to your experiences and who understand. There are many places where people deeply understand where support is shared.

[@pickle9753]

@@HappyQuailsLC hi. That’s ok. I was just venting it and not really expecting a reply. But thank you for the love. I appreciate it. I have found the online community to be very understanding, supportive, and helpful over the past two years of my healing journey. My cptsd is far deeper than loosing my friend, and I was actually isolating due to it, when I met and got to know him. He really helped me by just being my friend, and some one I could confide in. It will always sadden me that I was not able to help him in the way he needed. I do firmly believe he is safe and healed with love now though, and we will meet again one day.

[@boboak9168]

Great interview. Anecdotally, some wonderful people I have the joy of having in my life are managing psychotic illnesses. I find them to be especially humble, compassionate and non-judgemental when their illness is in hand. It seems to me their experience gives them a perspective that leads toward those qualities. I feel safe with each even during their psychotic breaks, although there are often behaviours that make me worry for their safety. It has been very confronting on the few occasions I have been the one to help them get to and accept medical care, but I always try to imagine how much harder it must be for them in that moment. I am also very glad to live in a country that provides a good standard of healthcare to all. This is definitely a topic that should be talked about to raise awareness and reduce stigmatisation. Thanks!

[@AndrewGold1]

Thought I replied to this yesterday. Didnt go through. Thanks Bob! Another beautifully written post, with which I agree whole heartedly. I admire how you help these people. It’s the least we can do!

[@oceonblu]

Just saw this feb, 2022. America. God bless you Bob. Thank you Andrew gold for this video. very hard to get help initially in Dayton ohio. I have a son and a daughter in law not until their thirties did any of this start to come out or I somehow missed it when my son was younger I don't know. We were very close . They are ruining their lives and I am heartsick he can be very aggressive and destructive when he is agitated or confronted with the issue of having a mental illness the same with my daughter-in-law. I pray that something will get them to accept help. They have been living with me and my husband off and on for years we cannot do it anymore. I don't know what's going to happen with them I am beyond terrified.

[@annasokolowska714]

I remember that I finished reading "The Day the Voices Stopped" by Ken Steele with the thought that schizophrenia is the worst mental condition that can be. I admire people like Jonny who have to fight their own minds constantly. At the same time, I feel lucky to be only bipolar as I can imagine that if I were schizophrenic I might trust myself more to a psychiatrist and not want to take any medications. Thank you both for raising awareness. When I attempted suicide, landed in a hospital, and then was discharged 5 days later, and the next day came back to school as if nothing had happened, there was little info about mental illness. Some members of my family even suggested beating the stupid thoughts out of me :P Thanks to people like you, a parent may learn how to understand and support a child with a similar condition.

[@carolmartin3028]

It is a heartbreaking illness was raised by a schizophrenic mother. It's heartbreaking and tramatic.

[@juliechurley2716]

The multiple personality thing is called disassociated personality disorder (Split for eg). Different to schizophrenia & caused by trauma- the multiples develop to protect the person.

[@TempermentalTart]

Schizophrenia can also be caused by trauma.

[@hefzi-babeula8631]

The voices in the head speaks loud and clear. I can tell because I was suicidal myself after stopping my medication for fibromyalgia swiftly. The withdrawal was horrible from palpitations that wouldn’t stop to tiredness that I thought killing myself was the way, specially because if the voices telling me to do it. I now do not take any medications except my daily matcha tea, b12 supplements, iron and changed my diet. After doing hair sample and blood test to rule out certain foods that could be a problem for me. I even discovered that my migraines came when I eat checked, etc. I changed career and now I help others as a transition of care CM. I can tell you when that incident happened to me that night, I remembered to do what a pastor told me to do. I was so scared that I felt in the floor and started to call The Blood of Jesus. I felt a presence in the room it was crazy that night. I locked myself in my office away from the family and kept repeating Jesus Christ name. It has been 6 years now since that night. The spiritual world does exist and so is God. I hope your son gets better soon in Jesus Christ name🙏🏽

[@ashleyschwartz9550]

Thank you for sharing your experience. The world needs more compassionate people that will step in to help as opposed to exploit or judge.

[@christinagiannaros9817]

I worked for an organisation many years ago that ran an early intervention for psychosis, finding showed if that early intervention occurs after a first psychotic episode the risk of having further psychotic breaks is greatly lessened. If pre disposed to some mental illnesses then recreational drugs can be a trigger, we saw this particularly in the later teen years.

[@maryannlockwood7806]

I grew up with my mother having bipolar syndrome. And the others to say I found the study of Matilda three fascinating. And I have a friend who son was on such heavy psychotic medication and he OD on heroin. I sometimes wonder if he took the heroine so that he would “feel something“. But just like you said, Andrew, we’re not doctors.🤷🏻‍♀️

[@AndrewGold1]

Yes very hard to know, but I'm sorry to hear about your mum, that must have been hard x x

[@warmbreeze43]

Hi Johnny. My son has this. He’s 34 now. Tried taking his life again and is still in the mental hospital. 3rd time. I knew when he was 3 or 4 years old. Wish I could connect with you. This illness is so lonely

[@AndrewGold1]

I don't have a contact anymore for Jonny, but I hope you're ok, and wish you well. Sending love, Andrew

[@warmbreeze43]

@@AndrewGold1 thank you for responding. Quite difficult right now for him. They won’t allow any contact because he never signed the paper

[@AndrewGold1]

@@warmbreeze43 oh god, I can't imagine the pain you're going through.

[@LCbr1j]

This may sound odd but you can’t always control your environment but you should get a good therapist to talk to & support you through this.

[@warmbreeze43]

@@LCbr1j thank you. My son has since this post been in and out every month. Two more attempts and now lives in his car. I’m broken. I do need a therapist for sure

[@katee8147]

Thanks for sharing-helpful. My mother lives with something frightening. Much care for your life

[@pickle9753]

Thank you for sharing your story, and for hosting the chat Andrew.. and “fiancé” 👏👏👏👏👏👏👏👏❤❤❤ This is a topic that really needs to be talked about more. I had no idea what my friend was going through and didn’t know he was even diagnosed. His brother and sister never told me, until after his funeral. He lived in my basement for a winter…I should have been told. He told me he some times seen and heard demons. If I knew what was happening to him, maybe I could have helped him better. I thought his behaviour was drug related only. People NEED to get more comfortable talking about mental health issues, instead of hiding it or self medicating out of fear or shame

[@BecomeConsciousNow]

I think a "chemical imbalance" is a made up term by the pharmaceutical companies in order to sell more products. I was diagnosed with "Schizoaffective disorder" when I was 19 and I definitely know it was from a traumatic childhood and maybe a pre-disposition to the condition. Thankfully, I only had the condition for about 5 years, but I do still suffer from severe anxiety. I'm on a spiritual path now and I'm attempting to use my condition to awaken and accept the way things are and be more present or conscious.

[@DannyD-lr5yg]

Do you take any medications? Or even herbal remedies? I’m still in the process of being diagnosed with….well, something. Bipolar, or possibly schizoaffective. Anyways, I’ve been taking kratom for years for digestive issues, but it’s also been such a boon to me psychologically. Well, just last year, a paper came out touting its potential as an atypical antipsychotic! It’s also replaced any Tylenol or ibuprofen for me for the past 10y, for both pain and fever reduction. If I HAVE to take something to hold it together, at least let it be from nature!

[@marybelllillyflowers4945]

✅️

[@jennifermicallef]

Just ran into this. Have been following your current content; prefer this genre of topics even more!

[@IsabellaLouiseAlexandra]

Fascinating! Thank you both for this! I am a mother struggling to know how to help...

[@flyingfig12]

So much we don't know about the brain.. that said, it's interesting how John Nash said that he had a much harder time trying to get off the psych drugs than dealing with his mental health symptoms. Says it all.

[@robynburns2375]

Andrew, have you considered getting Dianne Lake to interview? She was the woman (child at the time) who testified against Charles Manson and the others who committed those terrible murdered. She is fascinating. Okay just wanted to putt it out there. Now Ill watch this great interview😊

[@funkmeyer4614]

I had this most of the years of my adolescence.

[@BuntingClipClop]

An awesome interviewee. Great content. Loved it.

[@Jb-ky8tb]

Great interview❤️👌

[@HappyQuailsLC]

In the hope of being supportive to the Patreon guest with the guestion about fear as a child, I want to reassure you that in-between sleep states can be frightening to children especially when emerging from sleep in a dark room without being able to see familiar references to one's surroundings.

[@fairyspunfibers9098]

Very enlightening cast, Andrew! If I may cast a bit of light on the subject of exorcism (by a Catholic priest-exorcist). First off, neither you nor any member of the press or public would ever be allowed to watch. Generally, only the priest, his assistant (usually a priest) and very faithful family members (not to mention strong!). That could be quite dangerous to anyone unless they were living a devout and holy life, within the confines of their "state in life" (marriage, single-celibate, holy orders). No, it's not "catching", but people HAVE been hurt merely by being casual onlookers. They have also been highly embarrassed by having every single one of their unconfessed sins made public. Caution - and a thorough Confession - is strongly advised! However, NONE of this occurs until after the priest has determined that there really is demonic activity occurring. Doesn't have to be an actual, full-blown possession. Actual possession is still quite rare, but on the rise. (See Fr. Chad Ripperger, on KZbin, for further info.) There are certain involuntary eye movements made by the sufferer during a simple Blessing (quick diagnosis tool). An exorcism IS, in fact, a Blessing with the full power of the Holy, Roman, Catholic, & Apostolic Church behind it, and behind *that*, the Power of the Triune God, which is why it is so torturous to a demon. Very painful to them, understandably. IF there are certain, usually slight, indications of demonic activity, an exorcism may proceed *after* a full mental evaluation has been made, and a physical evaluation, as well: usually a full blood work-up, etc... Assessments are also made regarding the drugs a person is being treated with. Some drugs have such an awful effect on the poor patient that they can mimic a full-blown possession! I've seen it, myself. Don't want to see it again. Changes in meds may need to be made first and given time to see what effect the new drugs may have. FINALLY, if all is in train, and the person does need spiritual help, the exorcism can begin. What most people don't realize is that exorcisms OFTEN take months, years, or even *decades* to be completed. One or two exorcism won't usually cut it, and yes, the symptoms *will* return. When that happens, the exorcist simply needs to continue with the exorcism rite. If the patient experiences ANY relief after an exorcism OR symptoms worsen chances are, demonic activity is most definitely present. At the beginning, the relief may only last a day or two...or a week. Then; wash, rinse, repeat. Exorcism are free, btw. 😊🙏 Adding insult to injury is the poor sufferer who has BOTH a mental illness and demonic activity. Yes, that's pretty common. A good, effective exorcist will work with a good psychiatrist in any appropriate case, ie; when mental illness is known or suspected to be present. Another "little tip" from the world-famous exorcist, Fr. Gabriel Amorth (R.I.P.), is to understand that IF a patient has been on psychotropic/anti-psychotic/anti-depressant drugs, and "nothing ever really works", then it's time to bring in a reputable exorcist to pray a Blessing over the patient, for a diagnostic. OTOH, if prayer, exorcisms, etc. bring no relief, then they are looking at illness of some kind. This may bring up more questions, but perhaps answer others?

[@messpilo]

I agree with jonny doctors very easily prescribed drugs with no other options.

[@timbragg9684]

Thank you Jonny and Andrew for this conversation. A few comments: Was Jonny suggesting precognitive ability at one point (thinking about people and for then to see them appear on the street)? I would have liked to have found out about the subsequent meeting of Jonny and Mike. What kind of fellow was Mike and how he did he consider and think about his 'fame'. (Fame isn't the best word here - but it seems the best I can currently conjure.) Finally, the little girl who was killed (and I think it important to honour her memory) is Emily Jones. Perhaps I should use 'was' Emily Jones - but for many, I imagine, she remains very much present. Cheers!

[@AndrewGold1]

Tim! So glad you watched, thank you for taking the time. I can't speak for Jonny, but I think he wasn't suggesting he had precognitive ability so much as explaining how his mind is wired to interpret that kind of coincidence as something bigger. I should have asked more about Mike, I think you make a great point. It's so frustrating, I prepare and prepare for these interviews, and then I finish, and a mate will say 'ah right, so what does he think of this n that' - and I go 'oh...I didn't ask!' ... I've had to come to terms with the fact that there'll always be something, and I'm always wary of the time limits too - don't want to go over 65-80 mins. Maybe one day I'll have three-hour pods like Joe Rogan. And thank you for remembering Emily Jones, that's a touching gesture, and I very much agree that for many she is present. Very well put Tim!

[@timbragg9684]

@@AndrewGold1 - thanks. It was a great interview (but I was expecting to hear about Mike and Jonny's subsequent meeting!) ;) I know how you feel though - after I put a song out into the ether I always hear what I might/should have done with it beforehand. Re the precog - from what I recall he said something like: I think of someone [presumably as he's walking along a road/street] and then I see them/they appear. Even if we reduce this to 'chance' it could still be quite pertinent. 'If' the order of internal and external 'reality' is such that: he thinks about someone and THEN sees them - that is quite something. I'd be very interested in that. I'm halfway through your JW interview too and have listened to a few short interviews. VERY much looking forward to the next interview re Time. Cheers again.

[@AndrewGold1]

Ah I’m so glad you’re enjoying these. It’s tough starting out but it’s growing bit by bit thanks to people like you that were here early ! The time one, I admit, went a little over my head at times but it might be easier for you to grasp!

[@anyatranter5588]

Your guest is a very handsome man.He needs to know .

[@mspooner]

If I could get rid of my depression, especially my SAD, I WOULD. My depression has kind of wrecked my brain in the worst way, and even if that's the trade I have to make--that I would still lose that cognitive agility--I would. If I had to trade my dominant hand, I would.

[@powderandpaint14]

Are you on any anti-depressants? Do you take an omega 3 supplement or have plenty of sources of it in your diet? Do you take extra bit D in the winter months?

[@mspooner]

@@powderandpaint14 I have an anti-d, and I tweak the dose slightly by the season, but I'd love to get rid of it. It's given me night sweats and something less severe than a full dyskinesia. I have been taking vitamin D and that definitely helps, but....... it only helps. It's not a cure. I haven't tried omegas, but it hadn't occurred to me or been mentioned that could be helpful. I was more just remarking on the "would you get rid of it". I "only" have SAD and my mental health struggles don't....... help, they don't contribute positively to my life. If I could be rid of them, I would in a heartbeat and I wouldn't lose anything but the weight of them.

[@powderandpaint14]

@@mspooner i suffered with depression for a long time but it's very much lifted now, so it is possible. I also take an anti-depressant and omega 3s seem to have some benefit.

[@duaneglower8857]

Very relatable. Too many circumstances a patient is under medicated as well. Sometimes I'm told I'm paranoid, then I remind them Im simply a step ahead. Hollywood stigmatized! The most docile demographic on the planet Hollywood turns into somebody that can take buckshot point blank to the chest and walk away. My ass!! It's the people that believe that crap you have to look out for..."Salem"... Panic disorder and personality disorder. My girlfriend is bipolar, the worst type as far as I'm concerned lol. Periodically we make reference to the movie Powder. At the peak of anyone's episode I wish there were the ability to grab someone's forearm so they could experience it themselves. It's one thing to read the book, it's a whole new ball game when you wear the T-shirt. And I was going to guess he has very little interest in politics...

[@SHARON.I]

Holy cow Andrew this is the oldest video of yours I've watched. Hmm. Just 5 minutes in now. Never heard of this illness

[@AndrewGold1]

Have you seen the one with Hasidic Jew Emily Green? That’s older but I reuploaded it later. But the interview is one of the oldest. And she’s great! And Nate phelps from the Westboro baptist church. Those two are as old as it gets !

[@SHARON.I]

@@AndrewGold1 I will definitely check them out especially the Westboro one. I think I watched one of the founding pastor's daughter who left that crazy church. She was a good interview. This one ended like it was cut off though. I felt terrible for what he goes through or anyone who has to take antidepressants that have such terrible side effects. EDIT...see I even forgot HER name was Phelps lol

[@tipsygypsy711]

Didn't know you were in Berlin. Are you still living here?

[@AndrewGold1]

Nicht mehr!

[@tipsygypsy711]

@@AndrewGold1 Schade! 🙂

[@Jieisbshiisks]

Dr Robert Duncan the Matrix Deciphered

[@summer7529]

@44.20 In your late teens you were not taking medicine so had regular voices now u dont because you are managing it with medicine

[@kathysullivan314]

what a important discussion 2 post - great guest/great interview as usual. (2 u andrew 🙂🙂🙂)