It Gets Better!

24
279

A little more than 10 years ago, when I was 29 and 2 weeks away from turning 30, I was a patient in the psychiatric system here in Copenhagen. I am a pharmacist and I specialized in neurochemistry and psychotropics throughout my studies.

While I was working in the labs at The Royal Danish School of Pharmacy I was intent on getting a job as a medicinal chemist at Lundbeck – the Danish pharmaceutical company behind Celexa and Lexapro and in their own words the only company specializing solely in developing drugs for the treatment of neurological and psychiatric disorders.

At the university we were taught that psychiatric disorders were diseases just like diabetes and hypotension. We were told all the ‘truths’ that the psychiatrists now admit were myths about the so-called chemical imbalances in the brain and the clear genetic component of schizophrenia and other psychiatric disorders.

I have been hearing voices since I was 14 and I always knew that if I told anybody about them there was a significant risk that I would be labeled schizophrenic. I had kept that part of my life hidden for many years. I was so skilled at disregarding the fact that I heard voices that I could joke with my friends about “not ending up in there” when we passed the local psychiatric ward.

Life is not without a sense of irony. I never got to the point where I could contribute to Lundbeck’s prosperity in any other way than as a customer at my local pharmacy and I did end up in that local psychiatric ward. The first time I ‘visited’ that ward I stayed for 8 long months.

In June 2004 I had just moved back to Copenhagen and was living with my mother after an 11 month stint at various psychiatric wards across Denmark. In those days I rarely wrote anything and I have very little memory of writing this letter to myself. Yet somehow throughout the years I managed to keep safe the envelope that I had carefully labeled, “To be opened June 19th 2014”.

I don’t remember writing the letter. That process is bogged down in a neuroleptic mist and benzodiazepine-induced haze but somehow I had both the strength and the insight to write this letter to my future self.

I remember seeing the envelope when I moved to a supported living facility in 2006 and again in 2009 when I moved into my own apartment and lastly when I bought my current home and moved there in 2011.

In 2006 and in 2009 I was still heavily medicated so I quickly forgot about the envelope and in 2011 I had finally come off the meds and life was so full of new impressions, colors and conquests that I almost forgot about the letter.

Wednesday June 18th 2014 I opened the letter. It was a poorly phrased note telling myself that if I was still a patient in the psychiatric system and on disability there was really no reason to have my 40th birthday. I would then have spent more than 12 years as a psychiatric patient and if they hadn’t found the right combination of meds by then I was going to write a goodbye letter to my family and take the necessary overdose.

In 2004 my medication was a crazy mix of Risperdal, Zeldox, Nortriptyline, Mirtazapine, Chlorpromazine, Clonazepam and Movane and yet despite being so heavily drugged, I was clear enough in my head to know that never waking up again would be easy.

Earlier in June 2004 my family and I had had the first of many talks with the psychiatrist who emphasized that I was chronically ill, that I would never work again, that I would always need psychiatric care and the necessary psychiatric drugs and that I had to accept that life would be very different from what I had dreamt of.

I remember my mum telling me afterwards not to listen to the psychiatrists. “Doctors say so many things and no one knows what the future brings.”

I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.

Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.

In 2007 my mum needed a homepage and even though I could not do programing my mum asked me to design it. When I presented the design to the woman who eventually programmed it, I can remember thinking that coding a web page can’t be so difficult if she can do it.

She might not have been a computer genius but she excelled at billing and her invoices showed me a promising way to earn some extra money. In November and December 2007 I started taking all the e-learning courses about web programming I could get and in February 2008 I attended an evening class on advanced HTML programming. In May 2008 I started the first of five six-week-courses on web design and DTP and that changed my future. In January 2009 I moved out of the supported living facility where I had stayed for almost 3 years.

On the 15th of March I started working as a webmaster at a psychiatric residential home where I learned about recovery and heard about a completely different approach to mental distress. The fact that severe mental distress and traumatic experiences were linked resonated deeply within me. When I became part of the Hearing Voices Network in Denmark I learned of their approach in dealing with the voices. I created a homepage for the Hearing Voices Network in Denmark and in October 2009 I attended the first International Hearing  Voices Conference in Maastricht. I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.

When I got back from Maastricht I started the process of tapering off my medication. I also came back with a clear understanding that as a pharmacist with personal experience of about 40% of the psychiatric medications used in Denmark, I could play a valuable role in helping people who felt handicapped by their psychiatric medication.

I spoke with Jørn Eriksen, the head of the facility where I work, about changing my job from webmaster to becoming the first clinical pharmacist working with users in social psychiatry in Europe.

For the last four and a half years I have been fighting for the rights of the mentally distressed to get off their medication and have helped many people find a new life without psychotropics. I have seen how people change and thrive as they come off their medication and have supported them in their consultations with psychiatrists throughout the country.

Dan Savage launched the ‘It gets better’ campaign after three LGBT teens committed suicide all within three months. The campaign focuses on bringing the message of hope to gay teens and helping them understand that life might be hard right now but if they make it through the hell of high school, then what seems like a troubled life will change and they will have a chance to fulfill their dreams of a good life.

The campaign features videos of individual LGBTs and LGBT celebrities and allies telling their personal stories as well as corporations promising gay rights by ensuring a fair and inclusive work environment for LGBT people and politicians promoting their views on how to improve civil rights for the LGBT community.

For a long time now I have wanted to launch a similar campaign for people undergoing psychiatric treatment. Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.

Mad In America is abundant with stories of hope and recovery and it becomes clear that for those who want to recover from mental distress they must stop the chemical treatment and their beliefs in a biological cause.

For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!

It gets better the day you leave the psychiatric system and find your own way – not back to who you were but to the beautiful person you are without the drugs!

* * * * *

Editorial Note: Happy Birthday, Bertel.

 

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

***

Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.

24 COMMENTS

  1. Thank you for this very inspiring story. I heard Jaqui Dillon speak once. She is very inspiring. I remeber something she said, “I have turned my suffering into a gift for others”. That is what you are doing.

    I am a psychiatrist. I have, these days, zero belief in the biological paradigm. Every day I see how damaged people are by their diagnoses and the consquent narrative it offers of chronicity and hopelessness. It’s bedfellow, the discourse that says, “you must take these medications for the rest of your life”, is equally disabling, indeed in a more concrete way. Most days I support people coming off meds. I very rarely prescribe now. But its hard working in system that thinks differently.

    So your message of hope is very powerful. It does get better.

    Report comment

      • Catch 22 again – whenever you, as a person who experienced these wonder drugs first hand try to warn others, it goes back to – he/she is mental and doesn’t know what he/she’s talking about. One would think that most people should be happy and grateful for the pills were they really working so well but seems like it’s not the case. Wonder why that may be…

        Report comment

  2. Really great story! I have always thought that psych survivors need to unite in a way much like the gay community did to fight for rights and to expose the truth. What that looks like? I don’t know. Thank you for sharing your story and I am so glad to hear from another person that it gets better– I am still waiting at nearly 19 months off benzodiazepines and 3.5 years off the Seroquel, Remeron, Adderall, Neurontin and Trazodone.

    Whatever the case, thank you for using your experience for good to contribute to the psych survivor movement and to help bring other victims to the truth.

    Report comment

  3. Very inspirational post, Bertel, you brought a tear to my eye. I do so hope some day the psychiatrists will all learn that defaming people with fictitious diseases, taking away all their hope, and poisoning people with toxic drug cocktails is not “proper medical care.” It’s evil.

    And I agree, in order to get better, stopping the chemical treatments and understanding that there is no scientific validity behind any of the DSM stigmatizations is key. Define yourself, don’t let some quack dictate your life story. And it does get better.

    Report comment

  4. Awesome awesome awesome that you are fighting for people’s right to come off of drugs and working to better supports we offer people going through the often harrowing coming off experience.

    Work around coming off is simultaneously a systems change advocacy hammer and a non-bio-psych way to directly support individuals experiencing intense human experience.

    Thank you for this piece.

    In particular I resonate with these excerpts:

    “I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.”

    “Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.”

    “I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.”

    Report comment

    • It was actually a bit frightening to read my letter to myself. At first I was just relieved that the psychiatrists’ predictions were incorrect but then gradually the darker aspects of the letter has had me thinking.

      What if I had never met the people who inspired me. What if I had never heard of The Hearing Voices movement – would I then be dead?

      Scary thoughts but thanks for your comments 🙂

      Report comment

  5. “For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!”

    Correction: It CAN get better. Another possible scenario is that in the months coming off the drugs you develop a persistent and permanent movement disorder that gradually gets worse with age. The long term effects of the brain damage caused by neuroleptics is virtually identical to Huntington’s Disease, and from both my experience and from all the research I’ve done, once you have it to the degree that involuntary movements become persistent, then the damage will be self-perpetuating — getting worse year after year, as daily brain dysfuntion leads to more and more damage over time.

    Report comment

  6. Hi JeffreyC!

    I know that the long term effects of treatment with psychotropics can be devastating – but if the treatment hadn’t been stopped the symptoms would have come anyway and they most likely would have been worse 🙁

    Hope you or if it is one of your loved ones get the best compensating treatments that can be given.

    Bertel

    Report comment

  7. “Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.”

    I have a psych diagnosis that branded me as mentally ill and I’m still afraid of the repercussions.
    Thank goodness I was able to taper off numerous mind numbing psychiatric drugs ten years ago and the horrible Akathisia stopped. I now have a much better life drug free, can think clearly again and everyday am thankful of this.

    Your article was very moving and I applaud your helping others become more.

    Report comment

  8. Oh ya it gets better, the first book I read that changed everything was The Myth Of The Chemical Cure and maybe it was a God think because about the same time I met someone who told me about Mindfreedom Int. I remember reading that book and being like WTF ! this is how psychiatry really works ? Ya, thats how it really works. I was one of those “experts” who knew the difference between a so called SSRI and SNRI and that nonsense. I read that book and was told about Mindfreedom in jail and also in there I came off Clonopin hard in the jail psych ward and during withdrawal became thoroughly convinced I had actually died in this bad car wreck and that place was hell. I started to come out of the psychosis when I finally slept after about a week. It was horrible cause there were a few real dirty scumbags in the ward hiding faking cause they were such scum and weren’t safe in general population and had problems with them and then there was the SPAs “suicide prevention aids” who acted like cops. Nightmare. I got “sane” and got the hell out of there and it was so great rolling up and looking back at those scum hiding in there and going “later” and smiling.

    The sadistic SPA I came across again working in the kitchen and I put some of that jell the exterminators put in the corners of the place for the roaches in his drink when he turned his back but the POS never got sick and then I ended up loosing my kitchen job cause I went at him with the broom to take his head off but he ran. I would have lost my good time but I wasn’t thinking.

    But ya , it does get better no matter what path you take as long as the end result is getting better.

    Report comment

    • I am not done yet it gets so much better going from that life dependent on all these pills to feel right or drinking , isolated more and more my world got smaller and smaller along with any hope of ever being happy wishing to just be dead, panic attacks every morning and insomnia from hell every night over and over that was my life.

      I have a whole new life now, better than I ever thought I would get a chance at and I credit first anti psychiatry and second Alcoholics Anonymous.

      Report comment

      • My own experience Copy_cat
        I stayed sick and disabled while I accepted the medical treatment. When I tried to get away and stop taking the drugs I ended up in hospital, again and again, I nearly killed myself, and I nearly went mad.
        I got well and stayed well from (slowly) not taking my medication, and from suitable non drug help. I get asylum in the twelve step fellowship all the time, for me its like a complete detox.

        Report comment

  9. Tak Bertel!

    Godt Danmark har en som dig. Jeg har set dit oplæg fra København 2017 fra udtrapningskonferencen arrangeret af PG.

    Virkelig et godt og præcist indlæg. Jeg har dyb respekt for din store viden og dit arbejde!

    Report comment

LEAVE A REPLY