I hope that my comments will be helpful for those who might be struggling with schizophrenia.
My experience might or might not be typical, though for me this was what my subjective experience felt like.
I had teenage onset psychosis that resulted in a hospitalization and treatment for about a year with chlorazepam (?).
This was not in the context of any co-morbid drug or alcohol abuse.
I went through about a year of talk therapy which seemed not to be of any obvious help for me --- and that was about it --
My symptoms have largely spontaneously resolved while being treatment free for many years.
At the time I had almost no understanding of what was happening to me -- it just seemed to appear out of nowhere.
What advice would I give to an earlier version of myself before onset of my symptoms to improve the quality of my life (and hopefully others who might read this post)?
Number 1: Full genome polygenic scan.
Recently, I received full genome polygenic scores and was quite shocked to see my risk score for schizophrenia in the high 90th percentiles -- approaching 100th percentile. It had actually
never occurred to me that what I went through was called schizophrenia. I had never been that clear what nomenclature applied. Strangely, enough I do not think I have ever heard
the word schizophrenic uttered in any context in my house. The whispers of what the doctors suggested seemed to be more bipolar depression. The genome scan revealed no relevant risk of bipolar.
Even stranger is that other family members who had similar type pre-schizophrenic traits have never realized that they also likely have the genetic risk.
Of interest my full genome scan also revealed a range of other behavioral phenotypes that are also present in addition to the pure schizophrenic risk. In particular I find it interesting that
another polygenic score read out at an extreme for a non-schizophrenic trait that mimics the negative symptoms of schizophrenia. Another extreme score for an adjacent trait could mimic
positive symptoms of schizophrenia. It is then not actually that clear where the boundaries lines are for the illness and these other traits. Here simply saying that this or that behavior is
a positive or negative symptom of schizophrenia might then not be accurate.
Importantly, I can see the same broad outline of symptoms present in a few other family members. However, they have vehemently rejected all my attempts to have them genotyped. So, basically
this has meant that I am considered the family's hopeless weird person, while these family members have themselves struggled with alcoholism and other issues probably related to the illness.
There does seem to be an undeniable reality that forcing me to confront my problem with acute illness has actually had a long term benefit. The other family members were then simply
able to project many of their problems on me and in so doing have turned what for me was largely an acute illness into a lifelong chronic illness for them. The family has not been overly supportive
and they continue to have high expressed emotion which is not healthy for those at risk.
Having a name for what you are up against is super super helpful.
Basically for us, schizophrenia has been a disease with no name and this clearly made things much worse.
Especially for the other family members, who still do not have any understanding of what they are confronting.
The polygenic scores is simply of critically important.
I could plunk down my scores to any one with even a moderate understanding of psychology and they would likely pay close attention to me.
Having a near 100th percentile readout should give pause to almost any thinking person.
As it was, even the highly trained PhD level doctors that treated me, had no insight into the exact genetic drivers of my illness -- they were largely only
grasping at straws and most of what they surmised has been subsequently found to be inaccurate.
This current polygenic polyphenotypic era is dramatically more precise in helping patients understand what might be troubling them.
Number 2: L'enfer, c'est les autres [Hell is other people]
Most people really do not have a good grasp of what schizophrenia actually is.
I am not clear how high the polygenic scores of so called side walk schizophrenics might actually be, though it is possible that homeless people might have more
moderate to highish polygenic scores. The street environment would be so bad for those with psychotic illness that high polygenic scores are perhaps not even
required for positive symptoms to emerge. I am sure that I would be a complete mess in such an environment.
If you really want the inside scoop on what it is like, then asking someone with a polygenic score approaching the 100th percentile is probably a good place to start.
My current best understanding is that for those at risk of schizophrenia, it is a disease of society -- of being part of society.
The primary trigger for me has been other people -- people largely have been the only obvious trigger of my positive symptoms.
I am sure even now if I were to try to be the life of the party that I would rapidly deteriorate.
It took me some time to appreciate this, though eventually as I interacted less with others my well-being improved.
I have also found that making a conscious effort to try to behave in a normal social way is helpful.
Just being present with others can create some level of bonding which can improve the tone of personal relationships.
Teenage onset should be no great mystery -- those teenage years are exactly the time when one is the most pressed into being a social person.
Even now I am constantly encouraged to go to parties -- to have more friends --- to be more social.
I suppose these people mean well, though these suggestions would be so devastating to me and I am glad that I now have polygenic scores that prove it.
It is quite stunning how destructive the behavior of close family and the community has been to my well-being.
Some of the family are excessively extroverted (even using non-schizophrenic yardsticks) and they were constantly urging me on to be more and more social.
My current suspicion is that my hospitalization had more to do with a realization by family that such proddings were not going to be successful and they needed
me to have positive symptoms so others could try interventions to adapt my behavior. I found it quite surprising when other family members re-imagined my illness more as a result
of abuse -- I would not have thought of it like that -- yet, these other family had a medical background and they saw things more from the perspective of our family not
accepting me for who I was and of seeing this more in terms of a rural versus urban type dividing issue. My impression is that from their rural perspective
most of the hyper-urban type behaviors that we have demonstrated and which clearly amplified my symptoms simply would not be allowed in rural contexts
(e.g., the all out 24/7 work culture that we embraced)..
It took years, but finally my family and society largely gave up.
Life became a grudge match in which the community simply would not accept me for who I was (and largely they were entirely unaware and still are).
I see it mostly as quite abusive behavior by others who simply will not accept non-normative behavior.
Basically the entire performative nature of my sick role helped others (and me) to have the space needed to escape these normative assumptions.
Quite rapidly after this unfolded I was able to transmute my schizophrenia state into schizoid personality. This is largely the long term result with
schizophrenia for most who experience it and then one can be happy and live the life they want to. This path to a schizoid and lasting happiness has been
the journey that I have traveled -- the actual clinical schizophrenia phase was only a very brief part of the voyage. For many the ideal outcome might simply
be to bypass the schizophrenic phase; go directly to being a schizoid and then be super happy. For most though there is this fairly prolonged struggle in which
they must fight off the community's misguided attempts to impose normality. With the polygenic scores, it might now be possible to override the positive symptom
stage because even the most uneducated superstitious types would realize that they would not be successful in imposing normative behaviors on those with high
enough polygenic scores. Funnily, enough exactly when the community stopped trying to normalize people, the people would tend towards normality.
Being home schooled or being offered school choice would have probably helped me to avoid the more florid positive symptoms of my illness entirely.
I have in fact tried online education and it has been devoid of the triggers that I remember from bricks and mortar schools.
Normative bricks and mortar life was highly destructive for me. Schizophrenia is very much a disease of social relationships and the extent to which
community accepts people as they are and not how the community wants them to be. Considering the cost of schizophrenia is $350 billion per year in the
US, it is somewhat surprising to me that more thought has not been given to how to minimize this cost by providing more appropriate environments for those
with pre-morbid illness -- such environments potentially could completely avoid disease onset.
I greatly hope these comments will help others who might be confronted with this challenge.
Arranging my life in the way described above has made schizophrenia disappear for many many years -- with approaching robotics and the ability to
arrange the environment with even greater control, I look forward to an even higher quality of life.
Edited by mag1, 18 September 2024 - 04:01 AM.
LongeCity
