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Insanity in the UK

I’m a big fan of the English band, Muse. I’m a fan of their most popular album to date, “The Resistance,” released in 2009. I’m a fan of the first single of that album, “Uprising.”

 

I sing along with the lyrics…

 

“Paranoia is in bloom,

“The PR transmissions will resume

“They’ll try to push drugs to keep us all dumbed down

“And hope that we’ll never see the truth around.”

 

I like the song, even though that third line rattles around in my head.

 

“They’ll try to push drugs to keep us all dumbed down”

 

It’s hard to know what songwriter and Muse frontman Matt Bellamy means by that line. Is he literally referring to drugs or are “drugs” a collective metaphor for anything that distracts us from “the truth?”

 

If he is being literal, exactly what kind of “drugs” is he referring to?

 

I am not NAMI or “BringChange2Mind.” I don’t nitpick semantic uses of terms for mental illness in popular media. People and children with mental illness have bigger problems than words, like a lack of services and care. You know, serious things that might kill them if they don’t have them.

 

I don’t care about Matt Bellamy’s choice of lyrics. What I do care about is British attitudes toward the use of medications in treating mental illness.

 

A lot of my thinking about this has been sparked by responses I am getting from across the Pond to the airing of “Born Schizophrenic: Jani’s Next Chapter” in the UK. Like everywhere else in the world that Jani’s story reaches, I get a spectrum of responses.

 

I will give credit to the Brits for not suggesting an exorcism. That gives them one up on Americans-they’ve at least moved beyond superstition.

 

I will also give them credit for being FAR more polite about their distaste for our keeping Jani on medication than the American anti-psychiatric movement. How very decent of them. They make me a least feel like they would offer me a cup of tea and invite me to sit in the garden before proceeding to tell me how stupid I am.

 

(Note to British readers: There is no point to telling an American how stupid he is. It is an exercise in futility. I would have thought you would have learned that about us by now. If we didn’t listen to you 237 years ago we’re not about to start now).

 

The anti-psychiatry movement is everywhere, largely funded, no matter what they may say, by Scientology (because who else is going to give these fringe organizations money?) but nowhere in the English speaking world is there more “resistance” (sorry, Matt) to prescribing anti-psychotics to children than in the UK.  There is resistance amongst Australian doctors, New Zealand doctors, and Canadian doctors but nothing to level of resistance that exists in the United Kingdom.

 

But a country with a population of over 60 million is not going to be without children with mental illness.

 

First, let me say that your care of adults with mental illness is far superior to us. It’s your children with mental illness that you neglect. I know this because I talk to members of our adult MI support group from the UK who have no problems getting medication. I also know parents who are watching their children decline and can’t get a doctor to prescribe anti-psychotics.

 

It’s that British doctors are completely in denial. They will diagnose. A mother from the UK reached out to me recently. Her daughter has a diagnosis of conduct disorder and ADHD.

 

But no meds.

 

So (and this is not the first child from the UK that I have heard this happen to), doctors across the Pond will diagnose but not treat.

 

Oookaaaaay.

 

Over here, it is the other way around. Psychiatrists won’t diagnose but they will still treat. A psychiatrist will tell you, “I am not sure what we are looking at yet” but still write you a prescription for risperadal. And when that doesn’t work, they’ll write you a prescription for Clonidine. And when that doesn’t work, they will write you a prescription for Seroquel or Abilify. And on and on and on.

 

In America, providing you have insurance, your child will go through so many medications you will lose count and years of continuing or worsening symptoms without ever getting a diagnosis. It is hard to know if Jani would have gotten her formal diagnosis had we not, after more than a year, backed the UCLA doctor into a corner so she admitted what all the attending psychiatrists who participated in “rounds” (the daily observation and discussion of each patient) were already thinking but didn’t want to admit to. There was no other possibility left for them and for Jani. But I still don’t know if they would have actually given her that formal diagnosis had we not pushed for a NAME to this THING that was taken our daughter (her diagnosis actually didn’t become formal until her discharge from UCLA after four months inpatient).

 

But in America it doesn’t really matter. We wanted the label out of a desire to name the “Beast,” as if naming it would take its power (like The Exorcist). But the label didn’t change the treatment.

 

Sorry to break it to those of you who think Jani is on the medications she is because we “pushed” for the diagnosis of schizophrenia. It’s the other way around. She was already on the medications. In America, the diagnosis develops out of what medications work (to some extent-there must still be observation of psychotic symptoms). But the point is that doctors in America treat the symptoms and worry about the diagnosis later. If anything, the diagnosis is really just a means to be able to bill insurance or Medicaid.

 

In America, it is the treatment that matters. Does it work?

 

This is not a question they seem to be asking in the UK.

 

By the way, it’s not that American psychiatrists believe medication is a cure-all. Nobody is that stupid. But medication is the cornerstone, the base, of all other treatments (and yes, this includes autism in America as well). This because if you can’t stabilize the individual’s psychotic symptoms, anything else you do will be pointless, including “therapy,” whatever that means. And what do you mean? “Therapy” can be a lot of things: play therapy, recreational therapy, occupational therapy, music therapy, art therapy, equine therapy, animal therapy (all except the horses are included as part of UCLA’s inpatient program-yes, dogs come to visit the kids on the unit twice a week).

 

Unfortunately, none of those therapies is a cure all either. Why? Because you need to stop fucking trying to kill yourself or beat your head against a wall or chew on a chair or destroy your environment before you can even do any of those things.

 

American psychologists have come to understand that therapy without stabilization is pointless. You won’t get anywhere. Therapy is part of the maintenance of mental illness, not the initial treatment. Therapy is about learning to live with these diseases of the mind. Medication is what treats them.

 

They aren’t perfect. In fact, they are scary as hell and they must be watched at all times. But they remain the most effective means of TREATING mental illness over the long term and they remain our best hope for getting some out of a psychotic episode and back into their life in a relatively short amount of time (hopefully).

 

Yes, this is what we parents tell ourselves every time our children develop a side effect. This is what I tell myself every time I have to take Jani for a blood draw to check her chem levels. This is what I tell myself every fucking time either of my children go to sleep.

 

Every so often, we “forget” to give them a pill. Is it conscious? Maybe. Contrary to the opinion of the ant-drug crowd, we are always hoping to reduce the levels. So we “forget” a dose and see what happens.

 

The first day ends really well and you start to wonder. Maybe. Maybe they don’t need this high a dose. Maybe things are getting better.

 

Then the second day, everything starts to fall apart. Not rapidly. It’s more like watching paint curl in the heat of a fire and peel off. You see the disease creeping back. You see your child fighting back against it. And you see them beginning to lose.

 

So you, painfully, return them to the prescribed dose. You ride through the next day or day as the psychosis gains ground, because it takes a few days for the drug to return to therapeutic levels.

 

And no matter how lively and spirited your severely mentally ill child is on doses of neuroleptics that would put a neurotypical person into a coma, it doesn’t take away the fear. I still check on Jani in the middle of the night, just to make sure she’s breathing, even though logically I know there has never actually been a confirmed case of a child dying from anti-psychotics.

 

Yes, despite what the anti-psychiatry people will tell you, there are no reported cases of a child dying from these drugs (pre-1975), save Rebecca Riley. Rebecca Riley is all they have. And the only ones who really know what happened to Rebecca are her parents (both convicted of murder), the District Attorney, the Judge, and the jury in their respective murder trials. This is from the Wikipedia page on Rebecca Riley: “The medical examiner’s office determined the girl died from ‘intoxication due to the combined effects’ of the drugs Clonidine, valproic acid (Depakote), Dextromethorphan [cough suppressant], and Chlorpheniramine [anti-histamine] and that her heart and lungs were damaged due to prolonged abuse of these prescription drugs” [Brackets mine].

 

Rebecca remains the sole casualty of neuroleptic drugs (assuming that is what killed her-I am only going off what the medical examiner determined). The mother was convicted of second degree murder and the father was convicted of first degree murder. First degree murder in all 50 US states requires proof of intent to kill. Not neglect. Not “willful disregard.” That’s manslaughter. Murder requires intent to deprive of life.

 

The DA would not have sought this conviction and the judge would not have let it stand had there not been sufficient evidence. So it would appear Rebecca’s death was not “accidental.”

 

There are no other proven fatalities from neuroleptic drugs in the United States. Even the black box warnings of risk of suicide in teenagers on SSRI class anti-depressants are based on speculation, but there is sufficient concern that American doctors generally avoid SSRIs with children.

 

Which brings me back to Merry Old England.

 

At our last appointment, I asked Jani’s psychiatrist where she thought the British resistance to medications comes from. She attributed it to the UK’s single payer health care system. “To keep costs down, they limit the number of drugs available.” She exhaled. “Over there, they prescribe Prozac for everything, even psychosis.”

 

Prozac? Prozac actually does have a “black box” warning for those under 25. Interestingly enough though, that is only in the US. FDA studies and MHRA in the UK came up with conflicting data, or rather conflicting conclusions about suicidal “ideation” in children on flouxetine (prozac). In the US, the psychiatrists equate suicidal ideation with increased risk of suicide. The MHRA, on the other hand, does not consider ideation to be an automatic increased risk factor for suicide.

 

But I am not sure I buy her explanation. It seemed to “American” of an answer. Besides clozapine is used in the UK (with less restrictions than in the US) and thorazine.

 

No the “resistance” is something greater than the UK’s single payer healthcare system. British psychiatrists simply do not want to put kids on neuroleptics.

 

Why?

 

So I started searching for the answer in British culture.

 

British attitudes toward mental health can, I think, be best summed up by Pink Floyd, the boys from Cambridge.

 

One of the most well known Pink Floyd songs is called “Brain Damage,” from the “Dark Side of the Moon” album. Indeed, the band originally referred to this song as “The Lunatic,” referred to through-out the song…”the lunatic is in my head.”

 

Roger Waters has said that the lyrics for this song drew heavily upon the decline of Pink Floyd founder and (by that time) former member, Syd Barrett (the lyrics, “And if the band you’re in starts playing different tunes…” is a direct reference to Syd’s last days with the band when he would often play a completely different song from the rest of the band).

 

Yet two years later, during the recording of “Shine on You Crazy Diamond,” a song actually about Barrett, when the real Barrett suddenly showed up in the studio and offered to play guitar, the rest of the band had no idea what to do. They had no idea how to deal with his strange behavior and speech. Roger Waters was almost in tears and later, on his way to David Gilmour’s wedding reception, passed Barrett walking along the road and ducked down to avoid being seen.

 

Pink Floyd embraced “madness” in their songs, but couldn’t deal with the real thing in their face.

 

And I think that pretty much sums up the English attitude to mental illness. So much of your culture actually celebrates insanity (hell, even your King George III went insane). You pretty much “invented” mental illness (Bethlem Royal Hospital, better known to the world as “Bedlam,” was the first true mental hospital ever, dating back to the 13th Century).

 

I am not trying to be critical. We Americans are just as capable of denial.

 

I remember the murder of James Bulger in 1993 near Liverpool. A two year old boy tortured and beaten to death by two ten year old boys, Robert Thompson and Jon Venebles. It was a horrific crime to an innocent child. I remember the horror and anger that humans, children, could be capable of such barbarism.

 

Then again, Lord of the Flies was written by an Englishman, wasn’t it?

 

That book implied that with the loss of adult supervision, children become monstrous killers. Except, of course, Ralph and Piggie. Humanity is lost with Piggie’s death.

 

I think there is still a part of your culture that clings to the belief that you can keep “madness” at bay with strict rules and discipline.

 

Pink Floyd can tell you otherwise. It’s not your cruel headmasters. It’s not your history of conformist culture (which is really no more conformist than ours). Really, America and the UK aren’t that different.

 

James Bulger would be 22 now if he were still alive. I realize Thompson and Venebles are not great examples because they lack empathy. There is a pathology at work there, but not severe mental illness.

 

I think of the “infamous “Liverpool 38,” 38 people who saw Thompson and Venebles pushing along a crying Bulger and didn’t intervene, which is not entirely true. Many did, but Thompson and Venebles convinced them that Bulger was their little brother.

 

Did any of them actually ask Bulger if this were true? I don’t know. Maybe he wasn’t verbal enough.

 

My point, Great Britian, is listen to your children. Parents, listen to your children. Even the English mother who wrote to me seeking help for her daughter doesn’t realize that the “bad behavior” that she sees in other children and blames on other parents is possibly mental illness.

 

And to the English doctors, I say this: medications won’t kill the children you suspect are mentally ill…

 

…but that stiff upper lip just might.

 

Oh, and one more thing.

 

I was born in Australia to Australian parents. I am white. My last name is Schofield.

 

Where do you think my genetics come from?

 

The highest concentration in the world of people with the last name of “Schofield” or “Scofield” (both derived from the Old English word “scow,” or hut that shepherds used to live in) is Lincolnshire (Yorkshire is second).

 

The genetic line that led to Jani is still alive and kicking in the UK. There are “Januarys” all around you.

 

Medication is not the cure-all. But they contributed significantly to giving Jani a very good shot at life and happiness.

 

You’re good people. You sent your children out of London to the country during the Blitz. You know how to take care of your children.

 

Well, this is another Blitz. And this is not one you can get your children away from. Because it is inside their heads.

 

In many ways, the English are the strongest people in the world. You fought off the Nazis while we Americans were still twiddling our thumbs. Now the situation is reversed. You cannot afford to twiddle your thumbs. Severe mental illness does not respect an arbitrary age, even if you do.

 

Think about the Beatles, think about the Rolling Stones, think about Eric Clapton. What did they do? They took American blues music and sold it back to us.

 

Everything we do, you’ve done better.

 

So treat your mentally ill children better than we do. Take what we have started and make it better.

 

Make it better.

 

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23 comments on “Insanity in the UK

  1. Completely agree
    I’m English and I’m 15 so I’m still classed as a child and I agree with everything you said. My mental illnesses (OCD, depression & psychosis) first started when I was about 6-7 years old and when I told my parents that God was talking to me and I could see things others couldn’t they said, “you don’t want to be going down the psychiatric route”. I know they love me, and I love them, but this statement just sums up attitudes towards mental illness in this country. They fully believed that if I was diagnosed with anything or prescribed medication, then I would never find a job. I’m sure it’s similar in America, but over here it is very hard to get a diagnosis and be prescribed medication (if you’re a young person, for adults the services are much better).

    I was 14 when I finally went to see a doctor. I was severely depressed and had to ask him for medication. He prescribed sertraline and said if I was over 18 he wouldn’t have hesitated in giving me medication. The bizarre thing is he would sometimes interrupt me and tell me that I was over-reacting or that it wasn’t a big deal, but on another occasion he referred me to a psychosis intervention team. I know that if I hadn’t have been prescribed sertraline I would be even worse if not hospitalised because I was ready to take my own life.

    Also, mental illness services for under 18s in Britain are ridiculous. We have a service called CAMHS (Child and Adolescent Mental Health Services) which have failed more children than helped. They put you on a waiting list but don’t get back to you until about a week before they are ready to see you. Some people are on the waiting list for up to two years. Do they expect us to just put our illnesses on hold or something? When you finally get to see a psychiatrist they are extremely rude and act like they don’t even want to be there. With my psychosis intervention team they kept saying that “psychosis is a result of life experiences, not illness in the brain” which is completely ridiculous – I haven’t had any specific traumas in my life, thankfully. My parents took me out of the team because they sort of disappeared without any contact.

    A girl at my school (who I didn’t know) committed suicide in the summer which devastated everyone. She was only 14 and apparently had gone to the “well-being team” but they turned her away. When I was going through my lowest points they kept pulling me out of classes and telling me to try and be happy. Which isn’t the best thing to tell someone with depression…(I don’t feel sorry for myself if it seems that way, just angry at the lack of services and support).
    I wish you and your family the best. Thanks for reading.
    🙂

    Note from Michael: Wow. Thank you for sharing. I wish I could invite you into our Facebook support group for adults with MI. But sadly, ironically, you are under 18.

  2. Greetings, Michael – I hope you are all well.

    Day two of another new neuroleptic here … feeling pretty hellish … so, I guess Im ‘inspired’ to comment on medication utilization – both here and in the UK. Im American but have multiple friends from the UK who have struggled with MI for years. If you recall any of my previous posts you remember that I’m a ‘bloomin’ optimist’, so I want to draw some analogies that seem relevant.

    Though middle-aged, I have had a severe MI since early childhood. The approach toward medication use here in the 70’s-80’s was relatively similar to what youve described above. Now, was that because of the state of medical research to date at that time? Humph … not really. There was less available then, but more in terms of the designer meds, so to speak. Though effective when utilized in adults, identical medications were not used for kids. I was WAYYYY older than I needed to have been before appropriate medications were attempted. I contrast this with 5-6-7 year olds that I know who are on haldol or thorazine, and are reaping the benefits.

    If we look at the UK – I think there is a similar TREND but it is much, much, much delayed. My age British friends have had the same experiences that I had progressing to adulthood. But kids. So slow to change, movement has been miniscule. There has been some in the last 20-30 years, perhaps ‘before’ there would have been no pharm intervention for a child, now there is some chance – but no where remotely as much as should be the case. I hope though, that they follow the current path of progress and accelerate this. Your experiences – and those of others in similar situations will help to drive that.

    A totally unsupported thought that I offer in additon has to do with research, industry, and advertising. Here in the US, pharmaceutical research has boomed over the last half century. Research is at a furious pace – and therefore exposure of physicians and the general public. That is not the case in much of Europe. There is not the research, development, testing, and dissemination that we see here. So … again, just my thought, but perhaps this has something to do with the speed of change. Sometimes, the health care received in other countries outshines that available here. It is free, comprehensive, etc. BUT, could this also put brakes on progress? Less drive, maybe?

    Anyway, what you, and others sharing their families stories, are doing will help to DRIVE change. If a family in the UK is experiencing the same situations and learns that there are options (though not currently presented), I have to believe that they would push for these. I sure as hell would! So, by sharing and communicating there is a new offering of hope and, perhaps, the introduction of a different direction.

    “Keep calm and CARRY ON” knowing that your efforts could have a big impact there as well as here. Best wishes.

    Liz

    Note from Michael: Interesting. Thanks for sharing.

  3. Michael, I agree with you, Stigam is the leading factor that causes so much suffering to families. Imagine if we did not have stigma, then most of the patients would take the medications; we would have mental healthy parity; we would have more research and grants. If only people can have faith and understanding that mental illness is very much real and treatable; however, if you don’t treat it, then you have consequences. I am applying to UCLA this november as a psych major and I hope to help people one of these days–thanks for being my inspiration and giving me hope that a person can change things for the better–I will try to do that. I am coming to L.A. this November, I will see you then.

  4. Ignorance!
    I am an adult with mental illness, although it is not severe it is a battle. I live in Ireland. Looking back I probaly had ADD as a child but was never dignoised. My depression prob started as soon as puberty hit I believe it was the hormones that set it off. There is a long history of mental illness in my family and after year of suffering it finally came to a head after my daughter was born when I was 27. I turned against my son, I hated him 🙁 The smell of him, I wanted someone to come and take him away. He’d sit on my lap and it took every bit of strength I had not to throw him accross the room to get him away from me. I went to the doctor who put me on meds. My life changed completely and I began to see the past in a whole new light. I was never suicidal so never thought of myself as depressed or mentally ill, and I hid my behaviours very well from others.

    It was my ignorance. Because I only heard about mental illness when someone killed themselves or read about some woman who killed all her children I assumed because I didn’t want to kill myself or my entire family I was fine. :'(. I think alot of people still think mental illness is just your attitude, something you choose to do rather than something you have no control over. Most people who I tell I suffer from mental illness nearly fall over in shock. Im a very positive, happy person. I have a good life with 2 beutiful children. I always see the positive and am in no way negitive. They arnt there when I have no energy, when I spend 2 hours in the kitchen about to make dinner but still havent been able to open the fridge because when I do Ill have to decide what to make for dinner and that simple decission is totally overwhelming me. When I’m bawling crying over nothing or something really silly. When I cut myself off from people because its easier. When I find no pleasure in life.
    I think even up until I started following your blog I myself had not fully accepted that it was out of my control and that I wasn’t going to wake up better. I really think people just don’t get it!!!

  5. I guess “hanging on in quiet desperation is the English way.”

    I hate that these anti-medicine folks are so vocal that they lead some to suffer silently. Maybe it is because they (nor anyone in their family) really ever desperately need the medication. I suffer from anxiety/panic attacks and I’ll never forget a story my awesome pysch told me. When she did her internship, she and her classmates were given the option to experience something very similar to a panic attack with the administration of lactic acid in an IV. She did not choose to participate but mentioned that those who did were horrified and described it as an awful feeling. Even better, those residents who had experienced panic attacks personally said the lactic acid IV was nothing compared to the real thing.

    It’s too bad we can’t create a way for these people to see the world as Jani does (Jani goggles maybe?)after withdrawal from all medication. I guarantee they (and their families) would be begging for mercy within an hour.

    Keep on fighting the good cause!! Glad to hear the book is very successful. I read it the day it was available.

    Alli

  6. Michael, that was so beautifully written. I agree heartedly that therapy without stabilization is useless. I am battling the diagnosis-right medication-therapy for my two grandchildren right now. It’s a shame that children in the UK can’t get the same access to medication/therapy that our children can get. So much work to do, so many changes needed.
    BTW, I did get your message and invite to the group. I will be e-mailing you soon. Have had a CRAZY week.
    Thanks for everything y’all are doing!
    Karen

  7. Hello Michael,

    While of course I cannot explain entirely the British attitude towards medication that you are experiencing, I do wonder whether two cultural traditions that are much more prominent in England than in America are at work here. That is, both Medievalism and Romanticism are more alive there than here. The medieval world is still directly present in the surviving architecture of an ancient realm (giving Oxford Don J.R.R. Tolkien a huge boost in writing his great fantasy stories), while England remains the home of the best known Romantics in the English speaking world, and probably beyond. The medieval view of madness, then, was to view it as a kind of divine signal, or, rather presence: the madman, to be sure, could be a victim of demonic possession, but he could also be someone whose “wits” are already half in heaven (hence the term “halfwit,” which was not necessarily a term of derision.) As for the Romantics, they were quite opposed to the rational analysis of anything, including madness, which they, well, “romanticized” (consider Christopher Smart). In each case, scientifically developed medicine is going to be regarded as an intrusion on something spiritual, a “murdering to dissect,” as Wordsworth put it. And consider Anthony Burgess’s A Clockwork Orange, which, in a rather romantic manner, condemns the forcing of scientific behavior modification and medication on its wild protagonist.

    We Americans have no medieval tradition, and our Romantics (Thoreau, Emerson, Hawthorne) are largely being forgotten. We tend to be a practical people, preferring action to theory or reflection (thus, prescription without diagnosis, as you have experienced it).

    Well, just a thought. Your blog gives us much to think about.

    Note from Michael: Interesting points, Jack. Like being back in grad school:). But that is what I always appreciated about your approach to critical theories: they were based on what was practical rather than dogmatic. Yes, I can see things like “Intervoice” as being a direct descendent of the medieval view of “madness” and the anti-psychiatry movement descending from the Romantic view of the world. I had forgotten about the Romantics. Some of them truly were “mad,” as they called it then: Shelly, Lord Byron. It would make a fascinating dissertation actually.

  8. Differences in attitudes towards meds
    I suspect that the reluctance to prescribe medication to kids has to do with the view of meds, or drugs, in general rather than denial of the problem of mental illness. In Sweden, where my family is from, medication for anything is generally seen as something bad that should be used only as a last resort. Illness in general, but mental illness in particular, is treated with the least intrusive, least drastic method. A patient with depression is sent to a counselor before medication is tried. An insomniac is sent to classes about sleep hygiene. Someone with neck pain is sent to a physical therapist rather than being given a muscle relaxer or pain killer. There is just a general reluctance to put chemicals in the body and that’s even more so with children who are still growing and developing and where the medications often aren’t well tested. I assume the situation in the UK is quite similar.

    The general view of medication in the US is quite different. Medication is heavily used for all kinds of disorders. I wonder if the reason for this is, at least partly, sort of the opposite of Jani’s psychatrist’s explanation of the UK’s reasoning for denying meds. Instead of trying to save money on drugs the US has several factions looking to make money on them. The more drugs prescribed the more money the pharmaceutical companies make. Prescribing meds also saves the insurance companies money which, in turn, puts more money in the pockets of the share holders. It’s a lot cheaper to prescribe an anti-depressant to a depressed patient instead of putting her through months of therapy. The same goes for children. Although I’m sure there are a lot of things that play into the differences in medication usage between the US and the UK money and profits is most likely one.

    Unfortunately both ways of handling meds has, in my opinion, been taken too far. Clearly there are many British kids needing meds who aren’t getting it that will, as a result, lose out on a lot of progress they could otherwise make and there are many American kids who could be helped with other methods but are given meds after a ten minute visit with a psychiatrist (kids in foster care who are acting out due to circumstances are a good example). Something in between would be ideal. Meds aren’t some evil thing that should be avoided as much as possible, as is the Swedish belief, and they aren’t a cure all for everything as we tend to believe in the US. It’s all about widespread attitudes. How to change that I don’t know.

    I hope that rambling post made some sense:)

    Note from Michael: It did and I agree. There is not enough funding for therapy in the US. “Sleep hygiene?” See, I don’t even know what that is. There is no supports in the US other than medications. And it isn’t right.

  9. tyż lubię tą piosenkę
    nie wiem o czym jest ta piosenka ale ją bardzo lubię ze względu na warstwę muzyczną. fajne połączenie rocka, dubstepu i popu. z tytułu wnioskuję że piosenka jest o szaleństwie a ja też jestem schizofrenikiem jak twoja córka. pisałem do twojej żony ale nie odpisywała na moje maile. może dlatego że pisałem po polsku i tłumaczyłem przez internet i to co wyszło było tragikomiczne. pozdrawiam grzegorz brzęczyszczykiewicz z polski ;). odpisz proszę michaelu.

    Note from Michael: Hi Greg,

    Sorry. I had to translate your Polish. Thank God for Google Translator!: I do not know what this song but I really like it because of the film musical (probably meant to be “music video”). nice combination of rock, pop and dubstep. under the reasoning that the song is about madness and I’m schizophrenic as your daughter. I wrote to your wife’s copying but not to my emails. perhaps because I wrote in Polish and translated by the internet and what came out was tragicomic. I greet the Polish Brzęczyszczykiewicz greg;). Please write back Michael.

    Greg, you can reach me at michaeljohnschofield@me.com. Feel free to write in Polish and I will translate it via Google Translator.Greg, można dotrzeć do mnie w michaeljohnschofield@me.com. Zapraszam do pisania w języku polskim, a ja to przetłumaczyć przez Google Translator.

  10. They do have headphones that simulate auditory hallucinations. I don’t know of any for visual hallucinations though.

    This post is very interesting to me due to a conversation I had with my case manager this week about physical pain/illness being validated so much more in the US then emotional pain. A friend of mine died this past week from an asthma attack. She had a lot of emotional pain and physical pain as well. I am terribly sad she has died and will miss her greatly but am also relieved she is no longer in any type of pain. My therapist was trying to use it as a “remember this feeling when you are suicidal” type thing and I told her she was backfiring because while sad for me I was glad for her, so wouldn’t be people feel the same if I died? Apparently my thinking is a bit unusual. No surprise there. But this all led to the conversation with my case manager about how emotional pain is not given the same weight as physical pain in this culture and if anything it should be the other way around. She thinks part of it is because when you have a physical illness/injury there is usually a more defined path as to what will/won’t happen. For people with MI there is no clear cut answers and is often a daily battle. I get tired of fighting it. I first attempted suicide at eight and at thirty-two still have to fight it. I’m on your wait list for your book at the library but from what I’ve read here Jani’s hallucinations don’t seem to be too mean anymore for which I’m grateful for her.

    Note from Michael: K, if you are on Facebook, we have a great private online support group for adults with MI. Just people like you, living the daily struggle. If you are interested you can either write me at michaeljohnschofield@me.com or you can leave a private message at http://www.facebook.com/janifoundation.

  11. Is your son schizophrenic?
    Hi Michael,

    I read on the internet that your son Bodhi also has schizophrenia. Is that correct? I read that your wife said that he’s up at night being psychotic. I’m just wondering how you can tell that he’s psychotic? What kinds of things does he say or do that makes you think that he’s schizophrenic?

    Note from Michael: I am curious where you read this.

  12. Answer
    I can’t remember where I first read it (some forum, not the best source of accurate information) but I read it on the Jani facebook site too. I’m pretty sure that’s where I read that he’s up at night because he’s psychotic.
    I’m not trying to be smart or anything. I’m honestly just wondering how you can tell that he’s psychotic. Like what does he do/say? I don’t know much about psychosis in kids.

    Note from Michael: No, he does not have a diagnosis of schizophrenia. The rest is too complicated to answer in a comment response. I will write a blog about it one day.

  13. Hello
    Hi Michael,

    Long time reader (blog and book), first time poster. I think you make a valid point when you discuss the lack of “whole” resources for *anyone* with MI. I work in outpatient healthcare. I would say there is a stigma that we tend to “throw medication” at most problems be it pain/MI/asthma, etc. I wish we would incorporate (and have insurance cover or make the prices much, much more reasonable)combined therapy approaches. Jani is doing as well as she is because you and Susan have fought so hard to have a team approach OT/Behavioral/Psychologist, etc. to treat the entire person.

    I feel this often with the people I see. We need to treat the disease, but also need to treat the ripple effect through the psyche — the depression, etc. I am grateful for medications. As someone with significant issues with depression (yea celexa!), I know (as do you) that it’s not about, “just being happy”.

    Anyway, sorry for rambling a bit. Be well.

    Note from Michael: I agree. A “whole life” approach is needed. Medications alone are not enough. My only problem is with denying them when they are solely needed.

  14. clarification
    Michael — sorry, I wasn’t clear. I am pro-medication, absolutely. To deny an ill (be it mentally or physically) child desperately needed medication is wrong.

    I think about a passage in your book when you inadvertently took some of her risperidal (?) when you broke a table in half and it crumbled in your mouth. Your tiny daughter was running and playing after taking her dose, you were praying that you’d be able to stay awake and upright. How can there not be a chemical issue in a case like this?

    Note from Michael: I didn’t get the sense you were anti-medication. No worries.

  15. UK and medicines
    Hi Michael I’m from the UK. I’m 20 years old.

    Doctors here (I’m talking both General Practioners and psychiatrists) are perfectly happy to spend 10 minutes asking you a few questions and then automatically prescribe Prozac! I know this from experience as I was on this drug from ages 13-17.

    No exaggeration, they’ll prescribe fluoxetine for ANY mental health problem other than the most ‘severe’! Other medications are rarely considered. I’d say around a third of my friends currently take Prozac! I am deeply unhappy about this… Thanks for your blog post that puts my feelings into words… respect to UK and America though, we both have our good parts and bad.

  16. In response to what you said about a mother who has a child in the UK with ADHD and cannot get meds –

    I am not denying that there is an issue with getting prescriptions to psychiatric medication in the UK for children. It exists.

    But let’s look at the USA. We have over-prescribed children medications for ADHD since the late 80s. I am 21 years old, and was a child of the 90s. I was prescribed many medications for ADHD through my childhood. I went through many years where my parents, and school collectively thought I was mentally ill because I was extremely disruptive, destructive, and distracted. I was even diagnosed with Bipolar Disorder and ODD at the age of 12 years old after a suicide attempt. But let me tell you… I was suicidal because I was on medications that were conflicting with eachother – notably paxil and concerta. I did that because my brain was out of control and on drugs, and made worse by adolescent hormones. I was then on Lithium for one year… and when I was 14 I made the decision to stop taking it. This frightened my parents… but I realized one day that I had been on meds since I was only 7 years old. At 13 years old, you begin wondering who you are and want to gain an identity… and all I want you to know is that I’m happy my parents allowed me to go off of my medication. I also want you to know, that I have struggled with becoming who I am.. as all teenagers do… but am not mentally ill. I visited many therapists in my adolescence, and do not have Bipolar Disorder. Officially! I am also distractable, and could have signs of ADD even in adulthood but would never think of taking stimulants for it in College.

    I have a few friends who have become drug addicts because of their ADHD medication. I also know someone who had child-onset schizophrenia and he became addicted to Cocaine because of his ADHD medication that he had been given to ‘temporarily’ calm his hyperactivity as a kid.

    Right now, in Jani’s life… it sounds like you have made a very good effort to find out which drugs work and which drugs don’t. I applaud you for your decisions. Once your child becomes a teen however, she is only human. Help encourage her good behavior and intelligence. She is so, so bright. I hope the best for you… and just wanted to share my story for reference because I was a child who was overmedicated in my opinion. Sometimes it’s a learning style difference that schools cannot handle. I know that Schizophrenia is an entirely different ballpark, mainly because of my old friend from high school who was diagnosed when he was 8. Medications do help, but I do understand why some places are hesitant to prescribe them…

    Note from Michael: I actually agree with you. On all points.

  17. ive been in mental health services in england since i was 13, i have now learnt i have been “ill” since i was a child.
    when i was 16, i was sectioned and i didnt leave hospital for three years. from the ages of 16-18 i was on an adolescent unit, they were very helpful, they kept me safe from the world i was/am in, but they presecribed NO meds.
    they didnt mind IM’ing (injection in the bum) me when it got too tough, which was very traumatic, and sometimes it seemed really odd that they would do that freely without my consent, but when my parents asked about medication they just wouldn’t agree.
    they just don’t give medication out when your a minor, and i’ll never understand why, cause when its needed, its needed.
    when i turned 18, and got transferred to a new hospital, they put me in meds so quickly, and i was scared and i shouldnt of been.
    after a few trial and errors, we’ve gotten the meds and dosage right, and although life isnt good, its a lot lot better than what it was.
    everyday is still a battle, still this massive hill i have to climb to stay in this world, to get out of bed in the morning. but the difference with the meds is that the constant noise in my head is settled enough for me to actually try and fight this.
    before, it was genuinely impossible.
    and now, im out of hospital, after four long hard years.

    so when i read your post Michael, i felt for you and agreed with everything you said.
    its not fair, its not right.
    you can’t do the therapy without the meds making you stable enough to do it.
    and you can’t take the meds without the therapy.
    its an even balance you have to find, and the psychiatrists in child and adolescent mental health dont seem to understand this yet!

  18. Again, you inspire me.
    Michael,
    I read this posting back in October and it really helped me and wanted to share as it has been on my heart. I have mentioned that one thing I suffer from is severe depression that only gets a hell of a lot worse in the winter. This past spring I went off my anti psychotic for the first time in 6 years as they didn’t believe that I was truly bipolar like they originally thought so I wanted to see what life off of it was. My family and boyfriend were so ecstatic as they don’t believe I need one. I spent the summer doing well on my Cymbalta and thinking that the winter will go the same. September came and I started getting my warning signs if anxiety and loss of interest in things. These I can manage but then I kept getting more irritable and didn’t want to function at all. I was reading this blog a day before my psychiatrist appt and was moved. Maybe my psychiatrist was right when we were talking last year and he said yes the there are side effects, but for you in this moment the benefits outweigh the risks. People might not be able to see this, but I see this. An atypical allows me to be me, allows me to function and do what I want to do. It allows me to follow my dreams and give back to those who have helped me and who need my help. In the field I am in, I see a lot of my clients on my same meds but are in a much different mental state than I am in. I was at first disturbed by this, but my friend gave me something to hold onto in saying that I’m proof that the medicine actually works as I have been there and now look at me. Yes, it does work and yes, I do need it. Thank you for a message that was so helpful.

    Ps. I just read your latest entry and I will send money in a few days. Also, I hope you didn’t forget about my email as the offer still stands for me to help any other way I can! 🙂

    Note from Michael: Thank you, Kyle. It’s nice to know that I helped you in some small way. Particularly today, it really means a lot.

  19. English attitudes
    Hi!
    I had to reply to this because I’m frustrated about treatment I received (or didn’t) in England. I’m English. I grew up in England and moved away (abroad) when I was 18 because I lived in an abusive home and I was sure I was going to be tipped over the edge and hurt someone if I stayed a moment longer.

    Back story (I promise I’ll get to my point soon)
    I grew up in a physically and emotionally abusive household and developed a phobia of (other people) vomiting as a result of an incredibly drunk stepdad. He threw up everywhere – walls, ceiling, floor – and panicked while he was doing it, shouting that he would die. I didn’t understand what the fuss was about – whenever I’d thrown up, my mum said “oh dear, better out than in” and I felt better. This was different, I thought someone really was going to die.

    So I got older and one day at school there was a bout of winter vomiting disease. Four people in 3 classes threw up. I pretended to vomit myself so I could get sent home. I’m never going back there, I thought. So I refused point-blank to go to school where I did well, had nice friends and there was finally no bullying. I was normally really well-behaved but when the headteacher threatened to come and get me herself (nice approach to a phobic, huh?) I told her to “Just try it.”. My mum eventually did, but it’s hard to get a 5’8 teenager to go to school when they don’t want to. Or, I did want to go to school. But I couldn’t. So after about 3 weeks they referred me to a psychologist. Two appointments. Family therapy, except the stepdad didn’t come.

    So hey, even though I’ll throw myself out of a moving bus if I think someone is nauseous, I don’t have a phobia because I don’t specifically think I’m going to die because of it. They totally ignored all other symptoms. So no phobia treatment for me.
    So what about the physical and verbal abuse? Well, I was told by my mum that I would be taken away if I said anything, but I still professed my hatred for my stepdad right from primary school to secondary school, but everyone thought it was a stepdad-stepchild thing. I even went to the school psychologist and said I didn’t want to live at home anymore, I get hurt there. Nothing happened, despite them warning me profusely a few months before that if I even hinted I was in danger there would be drastic measures.

    Eventually, after an attention-seeking bout of self-harm I was prescribed anti-depressants. Get this. My mum let me take them for 7 days and then suddenly hid them. It’s not fitting to have mental illness. Sure, people have problems, but they just _deal with it_. As if I’m just not dealing with it. My upper lip is insufficiently stiff. And, I was told by my mum, EVERYONE will know you’re crazy if you get a diagnosis. It goes on your CV. Future employees will know.

    Bollocks. It was only when I moved away from home and sought help for my phobia that it became clear I actually suffer from PTSD with auditory hallucinations, like flashbacks, of the stepdad coughing or insulting me. Here, where I live now, the people explained what happens when you’re diagnosed and treated for a mental illness. Everyone I’ve worked for has been blissfully unaware of my past – and my present. I was prescribed antidepressants and my mum told me to take “only half of what the doctor prescribes”, so I don’t become “zombified”. I ignored her and am happily medicated with citalopram (Sepram). Wow, do I feel better. I’m also in therapy, funded by the state for the first three years, now since I’m in my fourth year of psychotherapy for young people, my psychologist met me halfway on her normal price, because -wow- she feels it’s more important I get help than pay the full price.

    My cousin was recently prescribed antidepressants after his friend committed suicide. He won’t take them, because “people will think he’s crazy”. Fuck that attitude. Seriously.

    Note from Michael: Wow. Happy for you now, worried about your cousin.

  20. Agree to disagree? Part 1
    I discovered your blog a few days ago and while the content on the whole is inspiring, this post in particular has been playing on my mind since I read it which means that I will have to comment to start getting sleep at night!

    Medication in the UK isn’t as difficult to get as you are posting in. In fact, it can be the opposite. To give you a bit of background, I am currently 24, developed the symptoms of schizophrenia at 18, diagnosed at 21. Aged 20, I was sectioned for the first time (I think it’s what you call committed? Or on a hold?) Either way, I was put in hospital against my will. I was told I was being put on 5mg Olanzapine (Zyprexa) which was an anti-psychotic. That was all I was told. I wasn’t even given a temporary diagnosis. Or an explanation as to why I was being told to take an anti-psychotic when I thought psychotic meant murderer! I wasn’t told as to the benefits of this drug I’d never heard of, I wasn’t told the side effects of it or how long I would have to take it for. I couldn’t even access the internet to find out about it. With the minimal information I had been given, I refused to take it. After three days of refusing, I was held down and injected with it in a completely disrespectful way (for starters I was a 20 year old woman and THREE men were present; one of the men was the person to pull down my trousers) After the humiliation of an injection like this in the backside, I then miserably complied. My problems were only just beginning.

    Side effects I received? A ravenous appetite. I ate four large meals and three large snacks every day and still felt starving all the time. Despite these meals and snacks being healthy, I still piled on the weight. I developed a problem with my facial muscles. My nose constantly looked like I was sneering at people (which was embarrassing) and my tongue went so strange that I spoke with a very heavy lisp. In the end, I had to give up talking for a while as I ended up sounding like I was just spitting. I could go into details about the lesser side effects but I won’t. After being released (8 weeks later) I wasn’t allowed to come off this drug that was causing me all this grief. It was of no benefit to me either I should add. The voice I was hearing was as intense and frequent as ever and its content was the same (it was an evil voice, wanted me to kill myself and my family; I never harmed anyone apart from myself)

    After two months at home, I finally saw a psychiatrist (different to the hospital psych) and he agreed to let me change to Seroquel. I had problems on Seroquel too but I’ll skip those.

    Ten months at home and I was sectioned (committed) again. This time I was in various hospitals for 17 months. My medication was changed again, this time to a depot (medication in injection form) called Clopixol. Clopixol was one of the worse meds I was on. The side effect of akathisia made me so suicidal that I begged a student nurse to either kill me or help me escape so I could kill myself. All this time on meds and the voice was not improving. Once I started Clopixol, I began hearing two new voices and the original voice now became constant. I would even hear him in my sleep, when the akathisia allowed me to sleep that is. Three months of that and I agreed to take the drug they’d originally wanted me to take – Clozapine (or Clozaril). The appetite I’d had on Olanzapine (Zyprexa) came back and despite the monitoring I was supposed to have, on the first morning after taking it I fainted whilst making myself a hot drink. No one told me that this is so common that it is an almost expected side effect. Thankfully, I had just enough time to put the kettle down before I ended up on the floor.

  21. Agree to disagree? Part 2
    Six months later, I was taking another anti-psychotic alongside Clozapine. Aripiprazole (Abilify) and two months after this, I decided to stop taking Clozapine. It was also not helping and the side effects were lowering my mood to extreme levels. I was still in hospital on a section at this point and as they didn’t want me coming off Clozapine, they gave me no help in coming off it. I had to come off it myself. Thankfully, I didn’t come off too quickly, if anything I did it very slowly. Yet despite this and despite the nurses telling me that I came off it a lot slower than most normally do, the withdrawals after 24 hours of no Clozapine were painful. I had vomiting and diarrhea for 7 days. Food either came straight up or went straight down and out. (Sorry to be disgusting) When I was finally able to keep food down, I was told I’d just had a stomach bug. The timing was extremely coincidental! Plus, I’ve not heard of stomach bugs here in the UK that last 7 days at that extreme.

    I was on Aripiprazole for over a year before finally being allowed off anti psychotics for good. By that time, I had finally received talking therapy and had managed to unlock why the voices had appeared and was able to get rid of them for good. My head had been voice free for a few months when I started coming off the medications and my head has still been quiet since its first silence, in July 2011. I have been anti psychotic free since November 2011 and only take Sertraline (Zoloft) now. I also take two other medications for the long term damage that has been done from the anti psychotics and I have been offered a third for the mild akathisia I still suffer with, three years after coming off Clopixol.

    So I would have to disagree with your opinion that meds aren’t freely given here. I know so many others who are given meds before even a possible diagnosis is made. And I also know several people in both real life and over the internet where medication made no difference to their symptoms.

    Your personal experience with schizophrenia is really only with early-onset schizophrenia like your daughter, Jani experiences. Yet early-onset schizophrenia is relatively rare. The majority are like myself where we develop the symptoms in late teens, twenties or even early thirties. I believe (I could well be wrong, this is just my opinion) that early-onset schizophrenia is caused by a faulty gene or chemical imbalance in the brain like the specialists say. Which is why the medications are useful for early-onset sufferers as the medications work to correct this imbalance. However, in the usual onset of schizophrenia at late teens, twenties, early thirties, many people may well be experiencing schizophrenia due to stress. This is my belief why I suffered from this illness. I suffered from severe phobias from the age of 7 or 8, then was bullied from ages 13 – 17. My symptoms started at 18. Many things that I heard from the voice was similar to things I heard from the bullies. Bullies threatened to burn down my house or push me in front of a train. A psychologist identified that these real threats led to the hallucinatory threats.

    So I would agree to disagree with most of this post I’m sorry. I’m also sorry that this comment is so long but I needed to put my point across. Psychiatric medications are freely available in this country and also the usual onset cases of schizophrenia may not react in the same way to the meds. Some figures I’ve seen say that 80% of people with schizophrenia react in a positive way to meds but from my time in hospitals, I would think that the figure is lower. This is my own personal opinion though and I wouldn’t expect that everyone agrees with it so I can understand if you disagree with me!

    But with regards to your family, I personally believe you do an amazing job with your two children. I saw in another post where you’d written in your book about shaking Jani as an infant, OK, it wasn’t a good thing to do but you identify that this was a mistake and feel bad for doing it. All parents make mistakes with their children and if they don’t then they either barely see them and leave a nanny to look after them or are massive liars. Human beings ALL make mistakes. I’ve made many as have every member of my family and every other member of the human race. Don’t beat yourself up about it. You do your best and if I may say so your best is better than most. Hopefully when I can get my concentration levels and reading ability back I can read the book.

    If you’ve read this in full then thank you, I’m sorry if I’ve bored you! I tend to waffle a lot!
    
Katy

    Note from Michael: No, Katy, it was definitely not boring to read. Thank you for sharing. The only thing I disagree with you on is that typical onset schizophrenia is caused by stress. Stress will certainly exacerbate anything but I don’t believe it is the cause or we would all be hearing voices. Nonetheless, I am sorry for your experience. In the US, it is virtually impossible to get “sectioned” even when you need it and want it because insurance won’t pay. We also don’t have any long term hospitalization over here. Everything is acute. The average stay in the US for inpatient acute care is 3-7 days. In the UK you still have long term psychiatric hospitals. We don’t, which I think is a bad thing, although your experience was not positive and of course I would never endorse that kind of treatment. I’m also not a big believer in talk therapy for people suffering from psychosis but I am glad you found something that works for you. As long as you are safe, then you are doing well.

    In this particular blog, I was referring specifically to the difficulties in children getting anti-psychotics in the UK, not adults. I am aware that this is not a problem for adults.

  22. So what I was trying to say in my previous rant.. you are doing a great job with your kids and I’m so glad that you listen to Jani and accommodate her needs. Even though I was eventually prescribed antidepressants and the health services would have provided what I need, I didn’t have the support in my family for the longest time. It seems Jani does, that’s amazing and I wish you all the best.

    Thanks for reading my post, by the way. Now I live abroad (in Finland), I wrote to the CPS in the UK and told them what I went through and explained warning signs they missed I got a reply: “Ok.”. So it’s nice that you listened, even though I don’t specifically have schizophrenia. 🙂

    Note from Michael: I read all comments that people post.

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