The
Sunday edition of the Longmont Times-Call paper (04/19/15) had a
story entitled, “Weld County couple rides the bipolar roller
coaster”. Since I carried the diagnosis of bipolar disorder, and
numerous other co-morbidities during most of my adult life, I had to
see what it said. I had attended the JFK Partners (CU School of
Medicine) 50th Anniversary Symposium last Friday, where
Patrick Kennedy delivered the Pediatric Grand Rounds presentation.
Discussed the Kennedy Foundation and current issues and legislation
(in America) regarding mental illness.
The
article discussed the story of a 38 y.o. Frederick, CO, woman who was
diagnosed with Bipolar Disorder II at about age 20. It was a lengthy
article that spilled over onto 3 pages, total. As I read the issues
she deals with, especially during deep depression, medication and
co-morbitities, I recognized a lot of my story where I was
“misdiagnosed” and fed medications for 23+ years, which has
eventually come back to bite me in the butt. Those inappropriate
combinations of toxins in my body actually, severely affected my
post-menopausal quality of life. In 2006, at age 52, I was diagnosed
with savant syndrome and autism (Asperger Syndrome). My manic
episodes actually turned out to be ADHD. My severe depressions were
due to unaddressed grief and separation anxiety over my father's
death when I was a sophomore in high school.
Learning
of my autism, savant syndrome, ADHD and Generalized Anxiety Disorder
was the BIGGEST aha moment of my life. At that time, I was a client
of the Mental Health Center of Denver. Because the state (at that
time) did not require community mental health services to have staff
trained to diagnose and treat adult developmental disabilities, I had
to do my own research to understand how autism historically fit into
and complicated how my life evolved; join outside support groups; and
find organizations and professionals willing to appropriately treat
my emotional and physical health issues.
The
issues that dictate this woman's quality of life are unacceptable,
and I want the WORLD (and her) to know it. I want to reach out to her
and let her know a life of just “getting by”, searching for
happiness at the the controls of misinformed doctors, is NO WAY to
live.
Evidently
(like myself), she was prescribed a vast array of psychiatric
medications to get to her current day treatment “cocktail”,
because many of the normal medications created unacceptable side
affects, or didn't control her depressions and mania. I wish
individuals who wind up on anti-psychotic meds/CNS depressants would
be fully made aware about their true (drug) abilities. If you read
the Physicians Desk Reference and the information it gives for any
drugs that have an influence on the brain and behavior, you would
clearly see, that the scientists and doctors DON'T know what it is
about those drug chemicals that helps people. They often have, in
small type, that “it is unknown what makes this combination of
chemicals work for certain disorders in certain parts of the
brain...it just works for many who receive it to treat that specific
disorder”.
Our
bodies are constantly changing as a result of environmental
exposures/interactions. Any given external environmental exposure to
our bodies, has the capacity to affect how our internal chemistry
reacts to unnatural (&/or different amounts of) chemicals
introduced via medications. Most drug studies are done on specific
groups and ages of people. I'm not aware of any studies being done
with psychiatric drugs that utilize a woman when she is
peri-menopausal, going through menopause, AND post-menopausal. This
is the single most time in an adult woman's body when her natural
chemistry is the most volatile and constantly changing. Since age 25
or so, up to and through becoming post-menopausal, I was influenced
to take just about every psychotropic drug to find stability in my
mood, behavior and performance.
Prior
to completing menopause, only one medication that had ever been given
to me created such a severe adverse affect, I refused to take it.
Usually, after the designated 4-8 weeks of trial on the med, I was
put on something else as a result of an ineffective outcome or
response. Like many people (especially women), I trusted my doctor,
who was trying to help me “feel” better, by tolerating the
massive weight gains and dry mouth that is often associated with
anti-depressants/anti-psychotics. Since 2006, that one medication,
with adverse side effects, has turned into 4 medicines with
full-blown allergy-like reactions, and 24 medications with
intolerable side effects. Funny thing is, 95% of these medications I
can no longer take were drugs I took for extended periods during my
life, that never induced that level of affect on me prior to
menopause.
Pharmaceutical
companies have every human, especially prescribing professionals,
convinced these unnatural chemicals they develop to be introduced
into our bodies, will prolong our lives and help us “feel”
better. This is more oftentimes a fictional fantasy than a guarantee.
What's worse, most drug studies are conducted when people are “clean”
of any other prescription medications, or are on a very limited
number of “acceptable” medications during the trial. I don't know
the numbers, but based on personal experience, would suspect that any
person who takes daily maintenance meds, are taking more than one.
There's no way every single combination of medicines and chemicals a
person consumes can be tracked. Every human physiological make up is
DIFFERENT. There's an infinite number of ways unnatural chemicals can
react within any given person's body. Granted, genetic studies &
predisposition play a large part in a person's physiological make-up;
however, genetic evaluations are not a requirement in drug trials or
dispensing of medications. If they were, there would be more
conclusive evidence on how various medications affect certain genetic
DNA attributes. This kind of process costs the pharmaceutical
companies too much time and money, and would much rather run the
numbers games and proceed with a crap-shoot kind of mentality of
whatever provides the best outcome for the majority. Problem is, most
humans are trusting risk-takers possessing a fix-it-now mentality, &
don't want to think about the potential long-term affects of chemical
ingestion. This scares me intensely.
OK.
I'll get off my soapbox about prescription medications and get back
to my concern for the woman in this newspaper article, and the
diagnoses she is being treated for. All kinds of bells and whistles
went off as I read this story. Besides manic depression high's and
low's, the article states she also struggles with PTSD and social
anxiety disorder. When she becomes hypomanic, she becomes irritable
and angry; even hypersexual. DING! DING! DING! This triggered big
time alarms for me. Also the fact that her diagnosis(es) were not
made into adulthood. She matriculated out of high school before the
mid-1990's.
Knowing
and understanding my story; working with and reading stories about
other adults with autism spectrum disorders, especially
high-functioning or Asperger's; and my adult advocacy and
collaboration with CU School of Medicine, JFK Partners, which works
with and does research around developmental disabilities and autism,
I've developed an awareness of the history of autism diagnosis and
its current classification, by the CDC, as a medical epidemic in
America. More and more adults are being diagnosed with ASD (Autism
Spectrum Disorder) via their child's diagnosis, or as a result of
community awareness prompted by the press and social media.
So
many theories exist and are rumored as to why ASD is being diagnosed
at an exponential rate. My theory, again as a result of my own
personal research and understanding of past and new scientific
research, boils down to this: “Prior to the 1990's autism awareness
in schools and with professionals (in America), was largely limited
to big cities/population areas and near universities with medical
schools”. The exponential increase is not primarily due to more
kids developing autism, but more expertise in recognition of the
signs and symptoms associated with autism in the educational and
medical communities.
The
prevalence awareness didn't really start on its current path until
the mid-1990's. Therefore, present-day adults who left the public
school system prior to that decade, who experience social and
behavioral maladjustment or are diagnosed with some kind of
behavioral or mental illness, could very well be living with an
undiagnosed ASD. What influenced my not being diagnosed so late, is
that early into adulthood, I was labeled as having Bipolar II illness
and a few other mental illnesses between 1979 and 1990. Thus, I was
labeled as mentally ill, and the stigma began that affected the
medical care I've received my entire adult life. If you are labeled
with a mental illness, and you go to the doctor with a physical
complaint or illness, if basic blood work or standard, generic
testing does not find the cause, the doctor writes you a script for
some anxiety medicine and informs you “it's all in your head; get
over it because only YOU can change what you think and feel”.
I
can go on and on about how this affects the psyche of the person who
is suffering. Let's suffice to say, this kind of professional
attitude and treatment can easily become the foundational trigger to
a person becoming more depressed to the point of saying, “why
bother? No one is gonna help me with this suffering.”, so may reach
a point of desperation that they become suicidal.
Healthcare
MUST evolve (ASAP) into an “Integrated” medicine approach.
Otherwise, more and more lives will be lost to suicide or violence
because “REAL” underlying physiological issues exist, but go
undiagnosed causing desperate, inappropriate behaviors; self-induced
or external violence of killing innocent individuals.
Case
in point, I learned at age 58, I had a malabsorption/metabolic
disorder ALL MY LIFE. Despite numerous trips to doctors and ER for
gastrointestinal issues, no physician wanted to really get at the
root of my complaints. If basic blood work and endoscopies did not
explain the problem, I was humored by being prescribed inappropriate
medications to serve as a placebo treatment for what ailed me;
furthering, over time, complications with my GI system. I wasn't
taken seriously, because I sought medical care for these symptoms
AFTER being labeled with a mental illness.
Last
year, at age 59, I learned I have a primary immune deficiency,
especially a deficiency of IgG subclass 2, which predisposes me to
pneumonia and cancer. Once again, this deficiency sent me to doctors
and emergency rooms countless times, but because of the mental
illness label I carried my entire adult life, I never received
appropriate medical treatment nor diagnostic testing that would have
diagnosed me sooner, and possibly prevented serious recurring
problems with my health, affecting quality of life in my senior
years. Some doctors respond by stating the technology wasn't there 20
years ago to adequately treat my genetic disorders. Maybe so, but
just the fact that I've suffered and been damaged, on a cellular
level, while trying to find a doctor (after I learned of my autism
and potential co-occurring physical issues connected to many
individuals on the spectrum), who would even listen and try to
explore what the underlying problem is, is unacceptable. These
genetic abnormalities were known about and treated, effectively, 30
years ago. I've had these genetic immune issues for 60 years now.
I've lost family members due to these conditions, but no one
considered I was affected because of my mental illness.
Now,
my medical insurance is Medicare ONLY, and I'm on SSDI. Medicare
doesn't cover the testing and treatment I need to improve my quality
of life and address the problems my cells are dealing with as a
result of the stigma and ostracizing I've received as a person with a
mental illness label.
Professionals
trained to diagnose and treat autism in adults, and their associated
medical issues is so limited, that hundreds (of thousands) of adults
with (mis)labeled mental illnesses will continue to suffer,
unnecessarily, and clearly have their quality of life, and their own
morbidity, severely affected because of this ignorance within the
professional & medical service industries.
Rebecca
(woman article about) may very well suffer from depression, but would
be justified obtaining a diagnostic evaluation for an Autism Spectrum
Disorder. Many of the behavioral issues experienced by individuals
with ASD develop because of the inability to communicate just exactly
what symptoms and issues are provoking that behavior. Our behaviors
often evolve as survival coping mechanisms for a lack of receiving
the truth. We are also known as a small segment of society prone to
following the rules as given to us, without questioning. We want to
trust that those professionals who are trying to help us know what
they are doing, but oftentimes following their misinformed expertise
hurts more than helps.
The
mentality of many medical professionals is they are insulted when a
patient tries to tell them what's wrong with them, or may have strong
suspicions based on the patient's own internet/medical symptom
research. They DO NOT live and breathe that patient's experience
every waking hour to truly understand what drives them and
difficulties a person is experiencing. Until professionals can make a
living, without government and insurance interference, by giving
their patients the necessary time to explore any and all medical
possibilities for the problem they are dealing with, the healthcare
system AND SOCIETY will remain severely broken and ill, itself. Of
course, medical professionals need to be (get) in the profession
because they possess the commitment to truly serving the betterment
of humanity and science, and not just the substantial paycheck,
status or quality of life that profession might bring a person.
I
didn't mean to write this much to address these issues. This started
out as an email to the Times-Call staff writer who wrote the story
mentioned; to feed him another perspective other than that of Rebecca
and her Longmont psychiatrist, and maybe reach out to Rebecca
regarding the “truths” I've disclosed here, which might provide
her with additional options in finding personal fulfillment, truth
and happiness in her life. Her present existence is not humane for
her or fair to her husband and other family members; especially if
new awareness can lead her (others) down a new path towards optimism.
