Tag Archives: Schizophrenia

Psychosis Susceptibility Syndrome

The new name for schizophrenia?

The term schizophrenia (meaning “split mind”, freely translated from the Greek) is still loaded with misconception and stigma (https://heilablog.com/2013/09/02/stigma-is-for-the-stupid-2/).

So let’s just get this straight: Schizophrenia has nothing to do with a split personality or Dissociative Identity Disorder, as its name may be misunderstood to suggest; and people suffering from schizophrenia are no more violent than the general population, maybe even less so.

Schizophrenia is a highly complex mental disorder, which may include a variety of symptoms, the most outstanding and typical being hallucinations and delusions, together referred to as psychosis or psychotic symptoms: http://www.differencebetween.info/difference-between-delusion-and-hallucination
http://www.nhs.uk/conditions/hallucinations/Pages/Introduction.aspx .

What do you see? If you see two dolphins you’re ok. If not, you should go home immediatelt and get lots of sleep.  Picture credit and text inspiration:   http://www.baeckerei-geisler.de/auch_das_noch.htm
What do you see? If you see two dolphins you’re ok. If not, you should go home immediately and get lots of sleep.
Picture credit and text inspiration:
http://www.baeckerei-geisler.de/auch_das_noch.htm
http://www.dangerouscreation.com/2011/09/mass-delusion-afflicts-the-u-s/
http://www.dangerouscreation.com/2011/09/mass-delusion-afflicts-the-u-s/
http://bipolarhappens.com/bhblog/does-bipolar-disorder-have-psychotic-delusions/
http://bipolarhappens.com/bhblog/does-bipolar-disorder-have-psychotic-delusions/

A person suffering from schizophrenia can be without symptoms over extended periods of time and lead an active and fulfilling life, especially if he/she receives consistent treatment. In this context I would like to encourage you, my friends and readers, (once again) to listen to this impressive and inspiring TED talk by Prof. Elyn Saks:

“Is it okay if I totally trash your office?” It’s a question Elyn Saks once asked her doctor, and it wasn’t a joke. A legal scholar, in 2007 Saks came forward with her own story of schizophrenia, controlled by drugs and therapy but ever-present. In this powerful talk, she asks us to see people with mental illness clearly, honestly and compassionately. http://www.ted.com/talks/elyn_saks_seeing_mental_illness.html

Modern scientific knowledge in the field of mental health proves the term “schizophrenia” to lack accurate description of the condition, and it is thus outdated. The idea to change the name was born.

I am convinced that, combined with increased efforts to educate the public about what this illness/disorder is really about, the fresh breeze coming along with the name change can considerably reduce stigma, increase acceptance by society, and thus tremendously improve the situation of sufferers.

In 2002, the Japanese established a name change for “schizophrenia” which led to much improvement. They changed the name Seishin Bunretsu Byo (mind-split disease) into Togo-Shitcho Sho (Integration Dysregulation Syndrome). Patients were more willing to accept treatment (medication and/or psychotherapy) and as a result there were less relapses and fewer suicides. There is an article about the Japanese experience by Mitsumoto Sato in the journal World Psychiatry (February 2006). It is important to notice that the lead-up to the name change consisted of an educational campaign about the “disease”; this will have given an opening for providing information also about factors on an individual level that could lead to a relapse and about how to cope with these stressors. Psycho-education is nowadays a key element in the modern treatment of schizophrenia.

Another example of a successful name change is of people who have Down Syndrome. Since the name change, they are much better accepted by society than before. Here too, the public were given helpful information and people with Down Syndrome got psycho-education about their condition and how to cope with it.

These two examples indicate that a change of name, together with education of patients, family, and society can be helpful. With this in mind, the Dutch patient organisation Anoiksis has begun a campaign to replace “schizophrenia” by Psychosis Susceptibility Syndrome (PSS). We are taking this opportunity to inform the public about what formerly “schizophrenia”, now Psychosis Susceptibility Syndrome, actually is; we need to put across the fact that the cases of unstable persons shooting innocent bystanders that reach the headlines are not typical.
http://www.ispraisrael.org.il/Items/02338/Vol%207%20Winter%202013.pdf

http://www.madinamerica.com/2013/11/schizophrenia-becomes-psychosis-susceptibility-syndrome/

http://blog.journals.cambridge.org/2013/06/renaming-schizophrenia/

P.S.
My son does not like the idea of changing the name. He thinks “schizophrenia” is cool and from the moment he received the diagnosis, he was fascinated with being “a schizophrenic”. He’s nuts, I told you. 😉

 

Group Therapy – Contact Outside the Group Meetings?

I love support groups and group therapy.

They offer so many benefits:

  • A feeling of togetherness with people sharing similar problems;
  • Learning from the experience of others and from the way they cope;
  • Learning to overcome your fear of talking openly about yourself (which can be extremely relieving);
  • Experiencing that you too have something positive to give to others;
  • Receiving feedback from others, including the group leader (in all the groups I participated in, this was either a social worker or a psychologist), which can help you grow, strengthen your self-confidence and your ability to cope;
  • Improving social and interpersonal skills as a result from the interaction with the group members. This can include having to deal with people you don’t sympathize with and with being exposed to criticism (whether that is based on valid evidence, or on a personal issue of the critic – either way you can learn from it, especially if the other group members voice their opinion).
  • Receiving additional information about treatments, relevant events & activities, etc.
Group Therapy (http://blogs.voanews.com/photos/2012/03/08/march-8-2012/#photo_9)
Group Therapy (http://blogs.voanews.com/photos/2012/03/08/march-8-2012/#photo_9)

Two support groups helped me function and stay sane during the bitter times of my son D.’s involuntary hospitalization, and the subsequent phase of his drug abuse. Divorced, having to work full-time, and without family in the country – I had to cope with my only son suffering from schizophrenia and smoking synthetic marijuana – a toxic drug with psychoactive effects: http://www.drugabuse.gov/publications/drugfacts/spice-synthetic-marijuana

http://www.drugs.com/synthetic-marijuana.html.

As if someone suffering from schizophrenia needed more madness!

This hellish substance completely detached D. from reality and messed up his senses: He would smoke in his bed and stub out the cigarettes on the bed sheet; he probably wouldn’t even have noticed the first flames if the bed had caught fire. (We still have souvenirs from that glorious time: shirts, sweatshirts, and bed sheets decorated with brown framed holes.) He would vomit a lot, didn’t shower, and his room was a pig sty. Speaking to him was pointless, the words didn’t reach him – it was like there was nobody home in his brain.

One stormy wet night D. left the house at around eight in the evening and didn’t return.  Worried sick, I called the police after a few hours and asked them to search for him. They did a thorough job, but could not find him. Despite the tranquilizers I had taken I could not sleep. I pictured my son lying somewhere outside, wet and shivering, unconscious and dying of an overdose. (Just remembering this brings back the feeling of then…)

At five in the morning D. finally turned up, soaked from head to toe and water dripping from his clothes. His eyes were red and small, open but as if asleep. He was hardly able to utter an understandable word. Totally stoned, he had wandered around for about eight (8!!) hours, not able to find his home!

But those times are history. D. has returned to being his intelligent, philosophic, and very sensitive self, fighting his illness (and sometimes me as well – it’s not easy) with all his might.

And I’m in a new group, a therapy group (Free of charge – Hey, who says the Israeli healthcare system is all bad? [Israelis!]).

The group is great, but much to my chagrin, one rule is that the group members are not allowed to have private contact with one another outside the sessions. I don’t see the benefits of this rule and neither do most of the other participants. On the contrary, I think (therapy, support or other) groups can be an excellent place to meet new people and build meaningful relationships (as I have done with people from previous groups), because within this special framework you get to know the other very closely, with his problems, which is an ideal basis for any kind of deeper relationship. What do you think?

 

OPEN DIALOGUE: An Alternative, Finnish Approach to Healing Psychosis

“In the far north of Finland, a stone’s throw from the Arctic Circle, a group of innovative family therapists converted the area’s traditional mental health system, which once boasted some of Europe’s poorest outcomes for schizophrenia, into one that now gets the best statistical results in the world for first-break psychosis.  They call their approach Open Dialogue.

Photo credit: http://getoutt.com/2012/03/glass-igloo-getaway-finland/
Photo credit: http://getoutt.com/2012/03/glass-igloo-getaway-finland/

Their principles, though radical in this day and age of multi-drug cocktails and involuntary hospitalizations, are surprisingly simple. They meet clients in crisis immediately and often daily until the crises are resolved. They avoid hospitalization and its consequential stigma, preferring to meet in the homes of those seeking their services. And, perhaps most controversially, they avoid the use of anti-psychotic medication wherever possible.

They also work in groups, because they view psychosis as a problem involving relationships.  They include in the treatment process the families and social networks of those seeking their help, and their clinicians work in teams, not as isolated, sole practitioners. Additionally, their whole approach values of the voice of everyone in the process, most especially the person directly in crisis.  And finally, they provide their services, which operate within the context of Finnish socialized medicine, for free.

Open Dialogue weaves together interviews with psychiatrists, psychologists, nurses, and journalists to create both a powerful vision of medication-free recovery and a hard-hitting critique of traditional psychiatry.” By Daniel Mackler

http://www.mindfreedom.org/kb/mental-health-alternatives/finland-open-dialogue/open-dialogue-daniel-mackler-film

The tide is turning…yes, psychiatry must face reality

A MUST read for everyone coping or dealing with mental health issues.
“Antipsychotic medication, which seemed so important in the early phase of psychosis, appeared to worsen prospects for recovery over the long-term. . . .It appears that what we currently call “schizophrenia” may comprise disorders with quite different trajectories. For some people, remaining on medication long-term might impede a full return to wellness. For others, discontinuing medication can be disastrous.” Thank you, “Beyond Meds”!

Everything Matters: Beyond Meds

From Mad in America today Bruce Levine talks victory:

no harmAfter examining two long-term studies on schizophrenia and psychoses, Insel has come to what was previously considered a radical conclusion: in the long-term, some individuals with a history of psychosis do better off medication.

Insel finally recognizes what mental health treatment reform activists and investigative reporter Robert Whitaker have been talking about for years—the research shows that American psychiatry’s standard treatment protocol has hurt many people who could have been helped by a more selective and limited use of drugs, and a more diverse approach such as the one utilized in Finland, which has produced the best long-term outcomes in the developed world….

….The Harrow and the Wunderinks studies, Open Dialogue, and the lives of many ex-patient activists dispel the myth that people do not fully recover from psychotic states. The reality is that people can experience long-term recovery, and for…

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Stigma is (for the) Stupid

“All societies will always stigmatize some conditions and some behaviors because doing so provides for group solidarity by delineating “outsiders” from “insiders”. – Sociologist Gerhard Falk. (Wikipedia)

Gecko on D.'s hand.
Gecko on D.’s hand.

My son has schizophrenia, so we will most probably have experience in dealing with stigma, you might think. Well, no, not really. When I take a few minutes to think back and relive the stretch of time that began with the day we received the diagnosis, and started telling the whole world about it, I find myself realizing that stigma has never really played a role in our lives.

Even if most of us know what stigma is, let me just share this very good definition that I learned in the Coursera course ‘The Social Context of Mental Health and Illness’:

Stigma is a combination of:

  1. Ignorance – Lack of knowledge,
  2. Prejudice – A problem of attitude, and
  3. Discrimination – A problem of behavior.

 Let’s have a look at these points.

Ignorance and Prejudice – I don’t think someone can be blamed for being uninformed about an illness he/she never had anything to do with. Before my son D. (who is highly intelligent and has a kind nature) was diagnosed with schizophrenia, I had a completely wrong picture of the illness. I thought that those suffering from it were unpredictable, strange weirdos with a split personality, an IQ far below average, and a tendency to violence. I had prejudice. I prejudged people with schizophrenia and had a negative attitude toward them, due to my lack of knowledge about the illness.

I think most of us have some prejudice.

For instance, what is your spontaneous reaction when you think of people who complete their studies with distinction and others who complete without distinction? Mine is, wow, those receiving ‘with distinction’ must be very gifted, more so than those who do not qualify for the distinction. Only when I ponder and become aware of the many possible reasons for a student not graduating with distinction, I realize that intelligence might not be one of them. Rather, personal circumstances, illness, language difficulties, having to take care of younger siblings or sick parents, etc. etc. may have rendered studying and concentrating especially difficult for that student.

 Discrimination – Having prejudice does not automatically mean acting in a discriminating manner.

The way someone behaves toward the object of his prejudice or misconception I think is greatly the result of the norms and values that prevailed in the environment this person grew up in, and how he or she was brought up to handle situations and treat people who deviate from these norms.

Back to the example of my own prejudice in regard to schizophrenia: In the beginning of D.’s stay in a mental hospital he was in a closed (I hate using the word ‘secure’ in this context) ward. I must admit that I was quite (negatively) overwhelmed when I first saw the other patients there. Mostly young people, some behaving strangely, completely aloof and seemingly not connected to their surroundings, some murmuring and mumbling to themselves, making faces or just staring into the void, others obviously depressed and extremely sad, and some even aggressive and loud. Visiting my oh so ‘normal’ son in this crazy surrounding nearly every day, I came to know the patients on a more personal level. My honest curiosity and interest, combined with a kind word here and a smile there, moved them to open up to me. Believe me, some of the life stories I got to hear were anything but amusing. An entire new world of mental and emotional settings revealed itself to me, both extremely sad and also very fascinating. Gradually, schizophrenia, bipolar disorder, multiple personality disorder, eating disorders, post trauma etc.  became a part of my thoughts and my life.

My son D. asked me to get him the best books about psychiatry and mental illnesses and disorders. He became absorbed with the subject and eventually helped the medical staff diagnose him. D. speaks openly about his illness. To a certain extent, he is even proud of being special. And we joke around. I sometimes call him my smart psycho son. In return he gives me a cheeky grin and says ‘Well, I obviously inherited my craziness from you.’

 Beyond the forces that govern us such as instincts, likes and dislikes, illnesses and other elements within ourselves and in our environment that we cannot influence too much, most of us do have a certain amount of freedom to choose. We have the freedom to think, to learn and to make changes; the freedom to decide to react in one way and not the other; the freedom to explain and help others understand, and the freedom to talk and let it all out. I am convinced that the extent of how much stigma influences our life depends considerably on how we perceive ourselves and our disabilities. By showing the environment that you accept yourself the way you are and have no problem talking about your strengths, weaknesses and disabilities, you minimize your vulnerability to criticism or ridicule. I mean, hey, if you openly say you have schizophrenia, the idiot who will still find it attractive to call you a psycho will look like the loony himself.

AND, the more we all openly talk about our disorders and get people to become aware of them, the more we contribute to reducing stigma. It is a snowball effect.

 I am a volunteer with the Israeli Association for Mental Health. Together with several other relatives of people with mental health issues we are a group that helps organize and come up with ideas for the various events & activities the association offers.

We are now independently starting a new project to fight stigma in the media here in Israel. If you have experience or ideas I’ll be happy to hear and get inspired, no matter where in the world you are located.

Thanks!  Heila

1. In the Beginning

I love geckos and there are two clans of them in my room. They come out at night and party, making those rubbery clicking sounds and feasting on flies, baby cockroaches and other creepy crawlers
I love geckos and there are two clans of them in my room. They come out at night and party, making those rubbery clicking sounds and feasting on flies, baby cockroaches and other creepy crawlers.

D. was born in Jerusalem, nearly 24 years ago.
He was an extremely sweet baby that developed normally.
From the age of three months he slept through the night.
I breastfed him for five months (tensions at home probably contributed to the fact that my body then stopped producing milk).
He loved drinking water, so I never needed to bribe him into drinking with sweetened liquids.
Hearing two spoken languages from the beginning, my German and his dad’s Hebrew, may have slightly delayed the development of his first spoken words. But once he started speaking, he didn’t stop. 🙂

Then there was the First Gulf War. Israel was under persistent missile attack from Iraq and everyday life was upside down. It was a stressful time and in the beginning I was in a constant state of panic, making it hard for me to relate to my child in a calm and comforting manner.  I don’t think I actually neglected him, but he certainly must have felt my fear. Eventually, we made it through those crazy months unharmed. Unharmed, but not unaffected, at least as far as I was concerned. For the next two or three years, any siren, like the one sounded on the annual Holocaust Remembrance Day or in home-front exercises, made me jump and my insides tighten in a mini panic reaction. My son however, didn’t display any post-war symptoms and altogether life was back to normal quite fast.

Shortly after the end of the Gulf War, early 1991, my husband – D.’s father – and I decided to separate. It was not a surprising thing, just the logical development of what had begun five (or six) years earlier as an infatuation, a flame and continued with a great deal of spikes, sparks and spits, only to culminate in the finale of a relationship between two people who actually never had a real bond going on between them.

 The day I moved out with my not-even-two-year-old son I had hired a young man to help me move our few belongings to the new place two streets further down. He had a big car and occasionally did such transportation jobs to earn a little extra money. I remember when I sat in the back of his car; there was a bunch of flowers wrapped in colored cellophane lying on the back seat. He saw me staring at the flowers and explained: “These are for my wife; it’s our wedding anniversary today.” Ouch, that was like a sharp blade straight into my hurting heart! I struggled not to burst out in tears, but eventually I couldn’t hold them back. I was soaked in sadness and filled-up with alcohol most of that day. I know that my environment did not perceive me as being drunk, and I actually don’t remember myself feeling hammered either. Life was just a little more bearable with a boozed brain. I did have a surprisingly high tolerance for alcohol in those tumultuous days, a phenomenon I was to experience in numerous extreme situations that life had in store for me in the next few years.

D. was in kindergarten that morning and when I picked him up I took him to the new place instead of to our home where we had lived together as a family, with his dad. I don’t recall how D. reacted to the new situation and in the days that followed our move. It really seems like parts of my memory are simply erased.

As it goes with life, we adapted and the new place turned into home. During the day I was at work and D. in kindergarten. We made new friends in the building and D.’s dad took him regularly to spend time with him. This killed me at first, but after a few months I started enjoying my hours and weekends “off”.

D.’s first signs of OCD appeared when he was about three or four. A coin fell from his hand to the ground and he didn’t want to pick it up. When I asked him to get it he said: “No, it’s dirty.” Now this might have been a normal response from a child who, like in most families, is told not to eat something picked up from the dirty floor before washing it. But there was more to his reaction.

Again, I really don’t remember the actual day-by-day development of D.’s OCD or schizophrenia and the behaviors he displayed then. I just recall bits and pieces, parts of the incomplete puzzle of the first decade of D.’s life.

I recently found a letter from a child psychiatrist when sorting out some old papers. There are less pieces missing in my recollection of D.’s second decade of life, and the time leading up to and surrounding his hospitalization is clear as a crystal in my mind, with all details painfully present and sharp.