Why are They not Listening?
By Vincent A. Boyd, Ph.D.

I am a highly educated person who roamed the medical community my entire career. I had two strokes back in 2014 that left me with both physical and mental attributes, but I was able to overcome several of my physical impairments via physical therapy such that if you saw me today, you wouldn’t know I had anything wrong with me, but I was still ousted from the medical community even though I was fortunate enough to remain quite competent especially about medicines and procedures.

I learned no doctor is the same. Doctors in my work worked as teams, discussed issues and remedies, the patient’s thoughts, we examined results together and came up with conclusions together. It doesn’t work that way in the general healthcare system. My insurance plan changed “it seemed” every year and new doctors would be assigned and want to change everything either because my medicines were “outdated”, “harmful”, or perhaps it was a pissing contest between doctors, or “illegal or frowned upon” because of their narcotic effects. It was like starting over every time. After being practiced on as a guinea pig and learning more about my limitations, I realized I was never to achieve “normal” with any of these doctors. I came to realize I had serotine syndrome, as the medical dictionary dictates “Serotonin syndrome is a group of symptoms that may occur with the use of certain serotonergic (denoting a nerve ending that releases and is stimulated by serotonin) medications or drugs (antidepressants mostly). The degree of symptoms can range from mild to severe. My symptoms were very extreme: high body temperature, agitation, increased tremors, sweating yet cold, dangerous pulse rates (120 and higher), extremely high BP (over 200/100), and a pain throughout my body that was incredibly unbearable (pain levels 9-10). I thought I was going to die each time going through these effects. It lasted until the drug was out of my system (about 10-15 hours) and serotonin (a body’s own compound present in blood platelets and serum, which constricts the blood vessels and acts as a neurotransmitter) was back to normal (about 2-3 days). It regulates mood, intestinal activity and appetite, memory, and sleep. I learned my serotine syndrome symptoms came on with several medicines including SSRI (Selective serotonin reuptake inhibitor such as Prozac, also known as Fluoxetine HCL) and SNRI (serotonin and norepinephrine reuptake inhibitor: a class of drugs that prolong the action of serotonin and norepinephrine in the brain by inhibiting their reabsorption by neurons which block the reuptake of both serotonin and norepinephrine such as the drug Cymbalta) antidepressants. In either case, both these classes of drugs brought on my symptoms and in some cases, I had to go to the ER (more than 3 times, I stopped counting). Other drugs that gave me problems included Lyrica, a popular drug with doctors that treats nerve and muscle pain and seizures. Hydralazine, a BP med that works by relaxing blood vessels so blood can flow through the body more easily. Both of these meds gave me the same symptoms as serotine syndrome drugs would. Anyways, none of the other doctors cared, listened, or did any scholarship on what was going on with me. It was up to me to be my own caretaker.

A comment about doctors and hospitals I should mention. Remember, doctors “practice” medicine and I find today, they listen very little to patients and strictly follow protocols and a list of medicines that are cutting edge and being pushed by pharmaceutical companies. One lesson to learn, if a doctor doesn’t listen to you (talk, tell them everything bothering you and be truthful), or get to know you, or doesn’t do scholarship to figure out the problem and not just treat the symptoms, or is robotic in his/her treatment……find another doctor, fast. I just fired my PCP and neurologist because they never listened to me and continually tried to prescribe me Prozac knowing full well that I would react violently to it. I warned them, and sent them articles about the subject. Only thing I received from them was more prescriptions of Prozac and firm instructions to take my medicine. You have patient rights, learn them and be your own doctor as well. For example, if prescribed a medicine, read everything you can about it: what it does, side effects, how long the therapeutic level is in your body and what are the minimum and maximum doses. You as a patient can refuse that medicine if you are not comfortable with it by just not filling the prescription at your drug store or pharmacy. Otherwise, write down any effect you experience from the drug.

Hospitals are the same way; they don’t listen and follow protocols that are applied to everyone. Their only job is to stabilize you and discharge you, period. Sure, you may get an MRI, EKG, or other medical scan that may figure out what is wrong with you so they can treat you for it but that’s really the only difference between hospitals and doctors. Hospitals and ERs only job is to stabilize you, get you in a range considered good, and discharge you. You should hear my story of how the hospital misdiagnosed my strokes. Unfortunately, probably in your areas there are not too many hospitals to choose from so you may be stuck with one only. If the situation is not good and you do not have confidence in the hospital abilities, go to another one, even if it means an extra 50 miles or so. Of course, your insurance may limit your options as well. Learning lesson, be your own health advisor. Technology allows this possible through the net, you only have one patient to deal with, yourself, and you can relay information to your doctor and have a true working relationship because who knows better your own body but you.

Medicines were developed originally for the whole population. Makes sense, right. Have an assembly line making a ton of one product for the whole public is better than one drug at a time. Cost effective widget idealization is what it’s called. There are over 300 million people in the US alone and I assure you one medicine will have different positive and negative effects on each one of them. Just like we are all different, medicines can’t deal with the differences. Today, there are designer (custom made) drugs for specific classes of people but they are more expensive to produce, and they won’t make money for the pharmaceutical company producing it (since they are only dealing with a small subset of people), and Doctors and Hospitals won’t seek out that class of people for that treatment. So, these drugs become less available for these reasons. I assure you, drugs are expensive because pharmaceutical companies take a lot of time and spent resources to get through FDA approval before a patent runs out, thus ending their opportunity to make money (and recoup the cost and profit). They do have investors where money is the bottom line.

Another fact about medicines, it is what I call “me too” drugs. Once a drug is developed for a particular thing, it won’t be long before other drugs that work the same way (using the same mechanism of action) are developed and sent out to the consumers. It’s all about money, producing a new widget that does the same thing (basically all the cost and work has been done by the original pharmaceutical company whose drug is now called the “gold standard”). They may be considered the newest, most upcoming drug in the arsenal but they are still the same drug as the original, and are placed in that class of drugs (for example SSRI drugs). Only a small improvement is noted. Understand, if I make blue V6 sedan car for a year, and change the color to red for the next year; it is still the same car and will do the same thing as the previous years. I compare “me too” drugs like a person adding jewelry or different cologne to themselves to differentiate themselves (smell prettier), but they are still the same person. You can put lipstick on a pig but never-the-less, it’s still a pig is the saying I am going for.

Broken bones, heart attacks, etc. are fixable and treatable. That’s what doctors love to do. You have a problem, they can figure it out what the issue is, fix it and get the satisfaction they crave with a fixed, working product. They are like furniture makers. Furniture makers build a table, end up with a finished product and sell it. That is satisfying to see a finished product. It’s satisfaction that drives many in the medical field. This is what people who go into medical school want to do, this is all what people want to do, obtain a product they can admire and observe, and be satisfied with the work they did. Mental health is a completely different story. It’s not anything you can see, difficult to diagnose, and even harder to treat. I compare it to trying to come up with a new idea or invention every day of your life. It’s difficult, time consuming, and lacks the satisfaction people thrive on. There is no medical device or instrument that clearly gives you an answer, and surely there are no set of questions that would diagnosis you to what disorder you have and be able to fix it like fixing a broken bone. I assure you that there are not many people entering medical school wanting to study psychiatry. That’s why there are so few, and the ones that are there in the field probably didn’t want to be there in the first place for some odd reason (perhaps the stigma that comes with it I would guess). It’s not that easy…..unless you are mumbling about doing something out of the norm and have a gun to your head, you are normal. Don’t get me wrong, there are psychiatrist and psychologist that love their jobs and are there to help but they are far and few. They may see it as putting a puzzle together in the dark and love the challenge, but again the satisfaction just isn’t there if you can’t see the finished product. Use the same rules above that I dictated for other doctors and you may find one you can trust and be comfortable with. To date, I have no psychiatrist and I am happy about it to be honest. The ones I had, I felt like they all have a grudge being there, tried guessing what this issue I had, prescribe medicines, and out you go until the next visit. Psychologists are different of course. They are not doctors who cannot prescribe medicines (though some do in some states), and really listen to you to see what makes you tick and offer coping devices. It’s their job and you’ll find more that love their job than you would a psychiatrist. I prefer psychologists to psychiatrist.

Depression is experienced by all normal people. Yet, there are some that experience it longer than usual. Depression and anxiety can be a vicious cycle spinning some of those (I am one) further down the ladder of being human. They are the ones that need help. Depression is a serious mental illness that can interfere with a person's life. It can cause long-lasting and severe feelings of sadness, hopelessness, and a loss of interest in activities. It can also cause physical symptoms of pain, appetite changes, and sleep problems. Symptoms and causes of depression can vary widely from person to person. Gender may also play an important role in why a person is affected by depression, and what it feels like to them. One of the common misunderstandings about depression is that it's similar to feeling sad or down. Although many people with depression feel sadness, it feels much more severe than emotions that come and go in response to life events. The symptoms of depression can last for months or years (doctors will usually look for symptoms that have lasted at least 2 weeks) and can make it difficult or impossible to carry on with daily life. It can disrupt careers, relationships, and daily tasks such as self-care and housework. Depression may feel like there's no pleasure or joy in life. A person with depression may not enjoy things they once loved and may feel like nothing can make them happy. Concentration or focus becomes harder. Making any kind of decisions, reading, or watching television can seem very taxing with depression because people can't think clearly or follow what's happening. Everything feels hopeless, and there's no way to feel better. Depression may make a person feel that there's no way ever to feel good again. Self-esteem is often absent. People with depression may feel like they are worthless or a failure at everything. They may dwell on negative events and experiences and be unable to see positive qualities in themselves. Sleeping may be problematic. This is all I had experienced.

Falling asleep at night or staying asleep all night can feel nearly impossible for some people with depression. A person may wake up early and not be able to go back to sleep. Others may sleep excessively, but still wake up feeling tired or unrefreshed, despite the extra hours of sleep. I fortunately take meds to knock me out for 6-8 hours a night but I nap during the day. Energy levels are low to nonexistent. Some people feel like they can't get out of bed, or feel exhausted all the time even when getting enough sleep. They may feel that they are too tired to do simple daily tasks. Food may not seem appetizing. Some people with depression feel like they don't want to eat anything, and have to force themselves to eat. This can result in weight loss. Yet, Food may be used as a comfort or coping tool. Although some people with depression don't want to eat, others can overeat and crave unhealthy or comfort foods. This can lead to weight gain. Aches and pains may be present. Some people experience headaches, nausea, body aches, and other pains with depression. Many people mistakenly believe that being depressed is a choice, or that they need to have a positive attitude. Before my strokes, I thought depression was a farce, I admit it. Friends and loved ones often get frustrated or don't understand why a person can't "snap out of it." They may even say that the person has nothing to be depressed about. Depression is a real mental illness. Those who have depression cannot simply decide to stop feeling depressed. Unlike typical sadness or worry, depression feels all-consuming and hopeless.

When you have a stroke, you have several physical and mental attributes associated with it. Doctors want to fix it all and make you “normal” again. They, from their experiences know what your symptoms will be and plan ahead and tell you this, making you believe even though you can’t see it (depression and anxiety for example) that you have some of the ailments they told you about. You believe them, you trust them and what they say because you just hit the wall at 100mph, and you want to get back in the fixed car and back to “normal.” This probably true for all ailments. I went to see a psychiatrist because no other doctor wanted to take ownership in prescribing the anti-depressants my previous doctor ordered. See, not even other doctors want that responsibility or job. I had to go, like a moth being drawn to an open flame. I thought I needed it because I was told I needed it. The psychiatrist never listened to me or my story, told me my anti-depressants that I was on originally were “old and outdated”, and asked me about 10 questions. 10 questions. Get this, for my answers to these 10 questions, he had a diagnosis…I have bipolar depression and immediately ordered SSRI drugs for me. Again, he never listened that I had serotonin syndrome but I admit, you have to trust a doctor and that his/her intention is good and you talk yourself into following the plan. I ended up feeling miserable and hospitalized a few times thinking it was norm or my depression. Funny thing is you go back to the doctor and he ask “how do you feel?” and it comes out naturally “you are ok”, scared that if you disagreed with the psychiatrist, he would lash out, give you more drugs that will make you feel worse, or send you to Mental Health Facility (yes, I went to one and that is a horror story by itself). He has threatened me with that a couple times with the Mental hospital threat. Unfortunately, I had very few options and felt stuck with him. I went through 12 different anti-depressants (not all necessarily with him), had notes on all of them about what they did to me. Five were SSRI drugs, two SNRI drugs, two Tricyclic antidepressants (TCAs), one Monoamine oxidase inhibitors, and two I would call uncommon antidepressants. I updated my psychiatrist regularly with this list which he never looked at and away I went. He didn’t know my background nor did he care…..he knew what was wrong with me by just looking at me and asking 10 questions. He wanted to make sure I knew he was the smartest person there and he could fix the issue.

No wonder nearly 70% of patients are misdiagnosed with bipolar disorder. Just google asking for “questions to determine bipolar disorder” and you’ll find them. I wish life was that simple. I guess what we need is to plug in a module into your body port where a code is displayed, look up the code and find the highly possible suggestions of what could be wrong (like a car). I unfortunately went along with the game, spent my time in ER several times because of his actions, and fired him after about 6 months later and now I was left with very few viable options. There was one other psychiatrist in town but she rejected my referral. The “wanting of antidepressants” I call by itself an addiction, because every doctor told me I needed them and I believed them because I trusted them.

I was down to two options, find a psychiatrist several miles away or go to a mental hospital to seek help as suggested by my Primary Care Physician (PCP). BTW, I fired my PCP because she suggested the mental hospital route and wanted me on Prozac. Two big strikes. Yes, there are those that need help medicinally, but I am suggesting that we are hypnotized to need medicines by TV and our own health system. At this time, I had no anti-depressants for about 4 weeks (stopped taking them after Cardiologist told me too after my last ER visit) and yet, I was blinded by the fact I felt great and had no issues during those four weeks I was off them. OK, the mental hospital route. Realize, you have to go to a normal hospital ER first and get medical clearance before being sent to a behavioral hospital. I hate ERs, you spend 8-12 hours there around really sick people (flu or other viruses, etc.) you don’t want to catch. The goal of medicine is to help people become happier, healthier, and more functional members of their communities. Having people with mental health issues cycle through the high-intensity, anxiety-inducing emergency room environment is not the way to do this, but this acts as a filter supposedly. Funny thing is physicians and hospitals ignore or pretend to be unaware of this problem. This isn’t something new to the healthcare system, this have been going on for decades, and is only getting worse. This is the culmination of years of for-profit healthcare models, pharma advertising and nearly genocidal hatred for the sick, poor and mentally ill. Watch TV and the commercials, almost every one is about anti-depression now and surprisingly they admit to a possible increase in depression and may increase the risk of suicide. It’s amazing the spin they put on sales of anti-depressants: take a medicine that may or probably will make you more depressed. It’s like selling beach property in Idaho or other closed-in state. There is plenty of blame to go around, and little recognition of the failures of whatever they call what they are doing, nor solutions I see in the horizon. The basic “diagnose and drug” model – the corporate profit motive – is a broken system. I could go on but let’s switch gears and head down mental health and my story. The sham here in ER is you’re asked “very vague” questions about your feelings by some doctor in a faraway place by some sort of iPad system (called telemedicine): have you ever been suicidal, how would you do it, when was the last time you wanted to die, and other apathetic questions. Answering truthfully didn’t help me. If you had a suicidal thought 6 months ago or a year ago, you are suicidal now. I can see them scribbling down blunt short answers and yet don’t listen to what you want or need. It’s like arguing to one of those speak/hear machines at some fast food place. They never heard that I wanted to meet with a psychiatrist though I was quite clear about it, and get the help I thought I could get by obtaining the meds I may need while voluntarily serving as an outpatient. Regular hospitals don’t know what to do with the mentally ill, they are filters, and they push the problem on to the next step no matter if they have to lie about it. Sure, they tell me, I’ll see the psychiatrist that day, get the help I need and be out sooner than I would know it but once you get the check mark on suicidal thoughts, you are marked for life and grouped among the cracked pots of mankind. There is tremendous fear and stigma associated with mental health. It makes the problem worse, as many patients fail to seek help at the onset of a mental health issue so not to be labeled. We also need to remember that stigma and discrimination exist when people distinguish and give labels to human differences that are associated with negative stereotypes. Labels give a sense of ‘permanency,’ disempower individuals, and take away any hope for recovery. This seems to be human nature, “discrimination and labeling.”

This was my case; a formerly highly respected person who felt I would be shoved aside and left to die on the curb if I came out with my true feelings. It took me almost two years to admit I had suicidal thoughts or tendencies because of this fear, so I wasn’t getting the help I needed before then. I did need help (medicinally) in probably the first couple of years after my stroke. It took guts to admit my suicidal tendencies, and now wish I never did and remained hidden behind the mask. To be honest, my melancholy “suicidal” ideations were not really intentions but a symptom of manic paranoia and the addiction for the need of antidepressants. Didn’t matter anyways, the hospitals and doctors treat this as a threat to harm yourself or others. Individual health care providers can help change things by treating mental health conditions like any other disease process, instead of treating them like burdensome acute flare-ups that can be squashed and forgotten then discharged until the flare-up shows its ugly face again. After being released by the ER, I was taken to a “Behavioral” Hospital by ambulance that early Saturday morning I believe. Obviously, we have come far in terms of our understanding of mental health and we don’t call them "lunatic asylums" anymore but really nothing else has changed. I was told later by an advocate investigator the hospital considered me right then and there that I was a danger to myself and others, and maybe not as voluntarily participant as I thought I was admitting myself. Yet, I was told It’s a common procedure for my safety. Upon arriving, an intake person at the hospital ask the same “vague” questions as asked previously, jots down a few items, assures you all will be well and hustles you through the locked doors of a “prison.” Funny thing was I was saying, that I felt great, and just looking for help from a psychiatrist. The lies of need were still egging me on. I’m not going into the story of the Behavioral Hospital with the exception of the medications and the “doctors” there. No formal diagnostic testing was performed, no structured interview protocol used, no individual therapy sessions, nor reassurance or coping strategies where ever established. Any diagnosis and its implications were never explained, I was just suicidal based on answers to “vague” questions. I was feeling tortuously horrible because I was an inmate in a mental ward, which very likely caused me more extreme amounts of stress and made me feel very physically ill due to all the extreme stress they were causing. The only way out was to take medication, shut up, accept their diagnosis and wait. I've never been treated more inhumanly in my life. It was law that I had to see a medical professional (a MD doctor or Psychiatrist) within 4 hours of my admission. Finally meeting the psychiatrist on a Monday afternoon (3 days later), was interesting by itself. Done on an iPad video system (telemedicine) with two staff members being present on my side so there was no privacy involved, we would have a chance to talk. The doctor ruffled papers and with a stern voice asked the two staff members that he had no paperwork on me, that I wasn’t officially admitted. He looked like he hated his job and had no care in the world. I was excused abruptly from the room. I did meet the psychiatrist again around 11am the next day after he was apprized by my admission and psych evaluation papers. He ruffled papers around, asked me why I was there, not hearing a word I was saying while he played with objects on his desk. He wanted to prescribed Prozac to me as he stated abruptly then he mumbled that he will be release me on AMA regretfully as I requested. I was out-of-there. Mental health professionals know that the first step in solving a problem is becoming fully aware of the problem. Right now, we seem to lack a true awareness of how insufficient—in fact counter-productive—our inpatient care system often is and has been for a while as I do my scholarship.

The inpatient population is not a wealthy, vocal, and well-organized pressure group, and in our current cultural moment, if you don’t have a strong voice, you may well end up wandering aimlessly down the drab corridors of an ill-staffed and ill-equipped hospital ward, talking to yourself. Many of the patients inside do not have any advantages and are likely to be held longer even against their will, and treated more poorly, even in cases where remaining hospitalized offers no therapeutic value—at a crushing financial cost to both the patient and the insurance companies or Medicare. I’m sure the doctors and psychiatrists are handsomely paid and thoroughly trained even though they would show up perhaps once a day for two hours luckily for the all patients or by video iPad conference typically. The system is too corrupt to even monitor the effectiveness of any of it. Even some advocacy groups (unnamed for now) are pharmaceutically funded so there really is nowhere to turn to. I did get over the addiction of needing anti-depressants (the asylum only made me realize this by the copious amounts of time allowed to think). Taking that out of my cycle my doctors have been able to finally control my BP, my stroke pains have not returned, and I feel normal. Yes, I still have to control my anxiety with meds but it was the antidepressants (SSRi and SNRi antidepressants) making sick all the time. Mental health patients do not need beds – what they need is a way to engage with the world as well as support and hope for recovery. Also, the provision of support/hope doesn’t have to come from medical doctors, but others that really do care. Today, there is a bleak picture of mental health inpatient care, particularly the increasing numbers of people detained and compulsorily treated. It seems attention is being placed on cost effectiveness and not on the real problem, the actual treatment. There has to be interaction, actual discussion between the patient and the doctor and the answer is not always shoving pills down their throats. Having patients speak shows a willingness to open up difficult issues not comfortable to them, which means their words are important, however irrelevant they may seem to the medical professional.

What are the solutions to this growing problem? Maybe more beds but that’s an old band aid. Dumping more money into the system won’t work by itself as already seen. What we need to do is think this out. How do we diagnose a patient quicker and treat them quicker and effectively? How do we get the help out there without any stigma or discrimination? What about the psychiatric field, that needs changing. Psychiatry carries the burden of being known as the specialty chosen by those who didn’t want to be real physicians, many in the medical field believe they are “unscientific.” You go through medical school but you’re not considered a “real” doctor. This really sours the group of psychiatrists out there now and they take it out on patients. See my discussion about doctors in general above on how they should act. Can we make this field more incentive driven and satisfaction fulfilling? Here is the solution that may be far-fetched, be more compassionate and supporting, not suppress and force them into a mold of normalcy. Medicines are a yes in many cases, but bottles of rainbow-colored pills to treat their symptoms with little or no therapeutic support to accompany them is not the way to go. Again, the people I met were not crazy, not nuts, and certainly not insane….they are you and me and the person beside you. Thank you to listening to my personal opinion.