The Bipolar Mental Illness Roller Coaster

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) 50^th 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.