Ep. 124 John F. Kennedy's Silent Fight: Chronic Invisible Illnesses, ADHD, and the Hidden Health Struggles of the former President. Part 1

This month is the 60th anniversary of John F. Kennedy's assassination. What do the hidden health maladies of one of America's most beloved presidents, John F. Kennedy, have to teach us about the complexities of chronic illness? This episode peels back the layers of JFK's lifelong battle with pain and fatigue as we journey into the world of fibromyalgia, ADHD, and invisible illnesses. With a special focus on JFK's family's attempts to conceal his health struggles, we dig into a narrative that echoes the experiences of countless individuals dealing with chronic conditions often unrecognized by the medical community. Tune in for an enlightening discussion about the evolution of diagnosing and treating fibromyalgia since JFK's time, emphasizing the biopsychosocial model in managing chronic pain. We also pay tribute to the University of Tokyo Pain Clinic physicians for their dedication to this cause, as exemplified by their investigation into the cold case of Margaret Mitchell.

The discussion continues as we explore the often overlooked aspects of ADHD, dissecting an interest-based nervous system, emotional hyperarousal, and rejection sensitivity. Dr. Satoshi Kasahara and his team offer an insightful analysis of JFK's life, further illuminating the underlying connections between his chronic pain, fatigue, and likely ADHD. This episode is a captivating historical exploration and a resource designed to assist those living with similar conditions in managing their health and improving their lives. So join us, as we shine a light on the intricate nexus of JFK's health struggles, illuminating the challenges and breakthroughs in our understanding of chronic illnesses and ADHD. Let JFK's story inspire and empower your own journey towards better health.

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Transcript

Dr. Michael Lenz: 0:50

60 years ago, john F Kennedy was assassinated in Dallas, texas. He was driving in an open convertible wearing a brace that kept his back upright, preventing him from bending forward to avoid the fatal gunshot. Hidden behind the healthy exterior was a man who had endured a lot of distress from chronic pain and fatigue. Despite the top doctors attending to him, he suffered from what now would fall under the umbrella of fibromyalgia and related illnesses. We will walk through his life together, with the help of an up-to-date understanding, to unravel the mystery of JFK's health. Doing so will help further the purpose of this podcast to understand your fibromyalgia or related illness better. It is also important for your loved one, whether that is a spouse, parent, friend or other support person in your life, to help understand what you are going through. It is also helpful for physicians and other healthcare professionals listening to the podcast to have better understanding and support of arguably the most complex and challenging group of patients that is seen by the medical community. This leads many, if not most, to limit their participation and hope someone else will be able to take up the challenge. Speaking of challenges, let's listen to what John F Kennedy had to say about facing seemingly insurmountable odds.

John F Kennedy: 2:26

We'll go ahead, whether we join in it or not, and it is one of the great adventures of all time. But why, some say, the moon? Why choose this as our goal? And they may well ask why climb the highest mountain? Why 35 years ago? Why the Atlantic? Why does rice play Texas? We choose to go to the moon. We choose to go to the moon. We choose to go to the moon and do the other things, not because they are easy, but because they are hard, Because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we're willing to accept.

Dr. Michael Lenz: 3:25

In some ways, trying to solve the fibromyalgia puzzle, to understand what's going on in this black box of complexity known as fibromyalgia, is like trying to get to the moon. I think we've learned a lot about fibromyalgia and related illnesses since the United States landed on the moon in the 1960s. When you hear the word misdiagnosis, what do you think of? A physician has made an error and an incorrect diagnosis of an illness has been offered as an explanation. But the meaning I want you to consider is a missed or absence of awareness, or a missing diagnosis, one that is not even considered because it is invisible to the doctor seeing the patient. There is unawareness that condition even exists. This blindness leads to the inability to recognize and make the proper assessment and plan for caring for a patient presenting to the doctor for relief from suffering. Examples occur throughout medical history Microorganisms as a cause of disease. Atherosclerosis leads to sudden death when a plaque is ruptured in a heart artery, dropsies a swelling of the legs caused by heart failure or liver cirrhosis or kidney failure. Medical mysteries during my career include helicobacter pylori as a significant cause of stomach ulcers. Sleep apnea is an important but often miscondition in half of those with atrial fibrillation and is a significant cause of fatigue in others. Twenty years ago, after attending a sleep conference, I learned the importance of screening for possible sleep apnea. Screening occurs first by being aware of the physical characteristics and symptoms of those with sleep apnea. Back then, it was uncommon for physicians to screen, starting with a careful history and physical exam, and then order a sleep study to confirm my suspicions and give life-saving treatment. Initially, even though I was very adept at recognizing those at risk for having comorbid sleep apnea, a patient had to be sent or seen by a sleep specialist to order the sleep study. Most physicians weren't up to date on sleep apnea and needed to learn through continued medical education. This led to extra costs and delays for patients at the time and the likely death for many who did not receive life-saving treatments. Now, sleep apnea screening is routine due to the education of doctors and the general public. Today I want you to consider fibromyalgia from a similar paradigm. Fibromyalgia and related illnesses are invisible unless we ponder the technology of functional MRIs and other research, and the patients living with these conditions, who are often looked at as a medical black box with uncertain guidance and remedies. There is so much more we understand about these invisible illnesses. We are light years ahead, but one of the biggest challenges is connecting all the components in a cohesive and comprehensive way. We are light years ahead, but one of the biggest challenges is connecting all the components in a cohesive and comprehensive understanding. There is so much research, but it too often is disconnected from the unique medical and other health specialties. The training and experience as a physician spanning the lifespan and all the organ systems, and the incorporation of lifestyle medicine allow me to understand the complexity. Patients deserve more. Today we are considering the life of John F Kennedy, who was plagued with debilitating pain, fatigue and some fibrophog, despite seeing some of the best care of the day. His body was tirelessly and humiliatingly probed by countless physicians in their quest to solve his medical mysteries. A surgeon and internist were allowed access to his medical records in the early 2000s to help understand what might be plaguing him, but it still left a major mystery until now what was John living with? That remains missed by most physicians caring for those with chronic pain conditions like fibromyalgia. The cold case was opened by a team of physicians at the University of Tokyo Pain Clinic carefully looking at his life using the biopsychosocial model. This is the same team that opened the cold case of Margaret Mitchell, author of Gone With the Wind, which I spent a series going through in the summer of 2022. The team of physicians has been caring for and researching patients with similar stories. As one of America's most famous and well-liked presidents, this series will unpack his health history through a different lens that brings John F Kennedy into an up-to-date perspective that eluded the physicians of his day and the internist and surgeon who look through his records early in this century. This in-depth evaluation of his medical history can't reverse what happened to the president and many of his relatives. However, we can learn from his story and apply essential lessons to care for people living in the present. It will offer much-needed validation for those living with invisible illness, who mask their suffering, just as John and his team worked to conceal his health problems. If the president has an invisible illness like fibromyalgia, well then you shouldn't be ashamed of yours either. A quick disclaimer remember that while I am a doctor, I am not your doctor. All signs and symptoms should be discussed with your own individual physician. And now on to this week's episode Fibromyalgia is still one of the most stigmatized and misunderstood problems. Despite significant advances in understanding, many physicians still dismiss these patients as hypochondriacs at worst and at best pass the baton to other physicians. I have heard from countless podcast listeners and patients the self-validation they receive from having a physician like myself push against the prevailing medical sentiment. But like the boy who was asked why he was throwing a starfish back into the ocean when there were thousands stranded on the beach, he responded made a difference for that one. That's the same attitude I take with my endeavor to help do my small part in helping serve those who are struggling. Patients with centralized pain, also known as invisible illnesses, like chronic low back pain, are more likely to have a neurodivergent style nervous system. Neurodivergence is a relatively new concept in the lay literature to describe differences in how the brain processes and experiences the world. This compares to the term neurotypical. These are used instead of abnormal and normal, emphasizing strengths and struggles in those with neurodivergent style brains. Examples include ADHD and autism, both of which appear to have affected the Kennedy family, giving not only unique talents but also deep distress. There are many positive aspects like creativity, curiosity, tenacity, high energy, an entrepreneurial spirit, spontaneity, an infectious sense of humor, a refusal to give up and various other assets. However, there is real distress and it could ruin your life if you don't care for them and get the support you need. The one we will be discussing regarding the former president is ADHD. Before we dive into this, it is good to have an overview, as there are many misunderstandings regarding ADHD. One is hyperactivity, which reflects early childhood dishinghibition of motor movement and later the inability to regulate such activity to the demands of the situation, such as a teacher's instructions to complete desk work. Those symptoms decline steeply over development and are of little diagnostic value by late adolescents. This is one of the reasons why clinicians mistakenly thought the disorder was outgrown before adulthood, which we now know is false for the vast majority of people, with at least 90% having persistence of ADHD into adulthood. They are more likely to feel overwhelmed than those with the neurotypical style of brains and autonomic nervous systems. As I have mentioned many times previously, most of those with fibromyalgia were much more active in childhood, which can be partially attributed to the impact of the higher prevalence of ADHD in those with chronic centralized pain syndromes. As we begin this journey, looking back into John F Kennedy's life and looking for clues of ADHD, it's important to know the signs and symptoms when we are considering the diagnosis of ADHD. The textbooks will talk about inattention, hyperactivity and impulsivity, but this, however, fails to reflect some of the most powerful characteristics, the ones that shape our perceptions, emotions and motivation. Dr William Dodson, who I had on an episode a year ago, is a adult psychiatrist who has dedicated his career to helping serve and understand better those who are living with ADHD. Defining features that he talks about are rejection, sensitivity, emotional hyperarousal and hyperfocus. Dsm, the Diagnostic Statistics Manual, is the foundation for making diagnosis in psychiatry and has had different revisions over the years, with the latest being the fifth volume For ADHD. It lists 18 diagnostic criteria that clinicians use to identify symptoms, insurance companies use to determine coverage and researchers use to determine areas of worthwhile study. The problem with these criteria is that they describe ADHD in children aged 6 to 12. The signs and symptoms of ADHD in teens, adults and the elderly, on the other hand, are not as well known. This has led to misdiagnosis, misunderstanding and failed treatment for these groups. Most people, and clinicians included, have only a vague understanding of what ADHD means. They assume it equates to the hyperactivity and poor focus, mostly in children. They are wrong. An important question is to ask what does everyone with ADHD have in common that people without ADHD don't experience, a different set of symptoms take shape. From this perspective, we have three defining features that emerge that explain every aspect of the condition. That's, an interest-based nervous system, emotional hyperarousal and rejection sensitivity. What does it mean to have an interest-based nervous system? Despite its name, adhd doesn't actually cause a deficit of attention. It actually causes inconsistent attention that is only activated under certain circumstances. People with ADHD often say they get in the zone or hit a groove. These are all ways of describing a state of hyper-focus, an intense concentration on a particular task during which the individual feels she can accomplish anything. In fact, she may become so intently focused that the adult with ADHD may lose all sense of how much time has passed. The state is not hyperactive. The state is not activated by a teacher's assignment or boss's request. It is only created by momentary sense of interest, competition, novelty or urgency, created by a do or die deadline. The ADHD nervous system is interest-based rather than importance or priority-based. How do I recognize an interest-based ADHD nervous system? An important question to ask is can you pay attention? And the answer typically will be sometimes this is the wrong question. Parents, loved ones and teachers answering it often express frustration because they have seen you hone in on something you enjoy, like video games, for hours. So your inability to conjure the same focus for other tasks and projects is interpreted as defiance or selfishness. Instead, practitioners should ask have you ever been able to get engaged and stay engaged? Then, once you're engaged, have you ever found something you couldn't do? Anyone with ADHD will answer along these lines I have always been able to do anything I wanted to do, as long as I could get engaged through interest, challenge, novelty, urgency or passion. I have never been able to make use of these three things that organize and motivate everyone else—importance, rewards and consequences. An effective ADHD management plan needs two parts. One is medication to level the neurologic playing field. I consider that, like getting a pair of glasses you need to see in order to let your other physical abilities come. Adhd management plan needs a new set of rules that teach you how to get engaged on demand. Stimulate medications are very good at keeping the ADHD brain from getting distracted once they are engaged, but they do not help you get engaged in the first place. The second key component of ADHD is emotional hyperarousal. Most people expect ADHD to create visible hyperactivity. This occurs only in 25% of children and 5% of adults. The rest experience an internal feeling of hyperarousal. When people with ADHD describe it, they will say things like I'm always tense, I can never relax. I can't just sit there and watch a TV program with the rest of the family, I can't turn my brain and body off to sleep at night. People with ADHD have passionate thoughts and emotions that are more intense than those of the average person. Their highs are higher and their lows are lower. This means you experience both happiness and criticism more powerfully than your peers or loved ones. Children with ADHD know they are different, which is rarely experienced as a good thing. They may develop low self-esteem because they realize they fail to engage and finish what they start and because children make no distinction between what you do and who you are. Shame can become a dominant emotion into adulthood as harsh internal dialogues or criticism from others becomes ingrained. How can you recognize emotional hyperarousal? Patients are trained to recognize mood disorders, not the increased intensity of moods that come with ADHD. Many people with ADHD are first diagnosed with a mood disorder. An adult will often see several clinicians and go through about six to seven antidepressant trials before being diagnosed with attention deficit disorder. Mood disorders are characterized by moods that have taken on a life of their own, separate from the events of the person's life, and often last four more than two weeks. Moods created by ADHD are almost always triggered by events and perceptions and resolve very quickly. They are normal moods in every way, except for their intensity. Clinicians should ask when you are upset, do you often get over it quickly? Do you feel like you can't rid your brain of a certain thought or idea when you want to? And the third component of ADHD is rejection sensitivity. What is that? Rejection sensitive dysphoria is an intense vulnerability to the perception not necessarily the reality of being rejected, teased or criticized by important people in your life. Rsd causes extreme emotional pain that may also be triggered by a sense of failure or falling short. Failing to meet either your own standards or expectations of others is a reaction that people with ADHD often struggle to describe. They might say I can't find the words to tell you what it feels like, but I can hardly stand it. Many with rejection sensitive dysphoria describe it as a physical pain like being stabbed or struck right in the center of their chest. Often this intense emotional reaction is hidden from other people. People experiencing it don't want to talk about it because of the shame they feel over their lack of control or because they don't want people to know about this intense vulnerability. How can you recognize rejection sensitivity? One question is for your entire life have you been much more sensitive than other people you know to rejection, teasing, criticism or your own perception that you have failed? When one ponders the emotional response of rejection sensitive dysphoria it can look like sudden development of a mood disorder. He or she may be saddled with a reputation as a head case who needs to talk to off the ledge. When the emotional response of RSD is externalized, it can look like a flash of rage. Half of people who are mandated by courts to receive anger management training had previously unrecognized ADHD. Some people avoid rejection by becoming people pleasers, just opt out altogether and choose not to try because making any effort is so anxiety-provoking. 99% of adolescents and adults with ADHD acknowledge experiencing RSD. For 30%, it is the most impairing aspect of their ADHD, in part because it does not respond strongly to therapy. The team from the University of Tokyo Pain Clinic used the DSM criteria looking at John F Kennedy's life and discovered that Doniff Kennedy had ADHD. Adhd and chronic pain are often connected, and treating ADHD has been shown to reduce symptoms. What do many experts, such as Dr Satoshi Kasahara and his colleagues in the Department of Anesthesiology and Pain Relief Center at the University of Tokyo, say about screening for ADHD in these patients? Clinicians should screen for ADHD, and why should they perform a careful assessment? Because those with chronic centralized pain syndromes and ADHD have an improvement in their symptoms with ADHD medications. Dr Satoshi Kasahara and his group from Tokyo wrote a well-researched paper discussing the life of John F Kennedy. Let's walk through their paper together and look at what they discovered. At the beginning of the paper, they share the example of MrA, with centralized pain in the form of chronic low back pain. Mr A was a middle-aged man who had developed low back pain seven years earlier while exercising, without an apparent injury, although neurologic examination revealed no impairment. He had an L4, l5 lumbar fusion and later had a sacroiliac joint fusion. However, he continued to have significant pain. His parents had high expectations of him. He described himself as a sensitive child who worried he was not good enough. He was often anxious and had stomach aches before school presentations, attributed to fear of disappointing his parents, particularly his father. Mr A's history shares much with that of John Fitzgerald Kennedy, who was born in 1917 and died in 1963. He was the 35th President of the United States of America. He had chronic low back pain, considered centralized or no-see plastic pain, as we talked about on a recent podcast with Dr Hassett. Jfk had other various medical issues as well. He bore unusually high expectations from his parents, especially his father, and was not good at expressing his feelings. Since childhood, jfk continuously suffered from several diseases, such as severe irritable bowel syndrome, possible malabsorption and adrenal insufficiency, hypothyroidism, chronic pelvic pain and prostatitis, allergies and insomnia. The most disruptive conditions were the chronic low back pain and abdominal pain. We will look at his life for evidence to support their findings. But first to better understand John, looking at his family history offers great insights. The genetic predisposition is common, so much that not having a relative with fibromyalgia or a related condition is extremely rare. His grandfather bought a saloon in the Haymarket area of Boston. This connected his grandfather to the upper class. The late-day life of Kennedy's father, joe, was known for the gift of gab. He was captivated by the belief in mind, power and the impact of positive thinking. Joe attended the prestigious Latin school in Boston but did poorly academically. He was, however, very competitive and excelled in athletics and extracurricular activities. He was the colonel of the drill team that won the citywide competition. He was the captain and had the highest baseball batting average in Boston. During his senior year, joe went on to struggle academically at Harvard, except in the realm of business. He started a bus company with the benefit of special connections to the mayor through his father, granting exceptional rights to the most profitable south bus station. He and his friend made 1600% profit on a $600 investment in the bus. Despite the business's success, he did so poorly in a banking and finance course at Harvard that he had to drop the class. Despite his poor grasp of the financial foundations of running a business, he decided to take a career in banking due to his insight that banking was an essential provision that all other companies depended on. This was symbolic of his strong ambition to be a millionaire. These are emblematic of many of those with ADHD. Joe married Rose Fitzgerald. Their second child was John F Kennedy, who was born healthy. It's unclear if he was colicky as an infant, but it would not be surprising if he had been, as it is common in many people who have a history of insomnia and central pain sensitivity syndromes. John F Kennedy was later known to have restless sleep. Joe was elected to the prestigious position on the board of the Massachusetts Electric Company. He later left banking and became an assistant manager at a shipbuilding plant. During World War I, he worked constantly, sometimes sleeping in the office, to prove his worthiness. He was known for his inventiveness. This sounds like Elon Musk, the head of Tesla, who, on the brink of potential company failure, worked long hours and was known for sleeping at the factory before the company had a major turnaround to its present form. Joe then took a job as a stockbroker. He used his position to gain insight and information to take a $10,000 a year salary to earn $2 million over the next six years. Adjusted for inflation, that would be about $173,000 and taking it to $25 million. He also made money in movie theaters and selling liquor during prohibition. What were John's parents' personalities like Prior to Rose? A conformist, joe prided himself on being unconventional, bolder, more adventurous and, if needed, a rule breaker. Innovation and imaginative thinking would be his hallmarks. His independence and willingness to defy accepted standards expressed itself in impulsive womanizing with scarlets and other casual lovers. His pride was so high that he teased Rose in front of their friends about her sexual inhibitions. Due to his harsh treatment, they moved into separate bedrooms after their last child was born. Some considered his womanizing as a competition. He made little effort to hide his behavior, let alone seek forgiveness. What was John F Kennedy like as a youth? When John F Kennedy was a child, his mother had struggles and would leave to go on trips which would cause John to openly cry. This greatly distressed Rose, distancing her from her anxious son. However, her presence wasn't necessarily an improvement. She had rigid rules and behavioral expectations that upset and angered John. She was a stern disciplinarian with a strong desire for neatness, order and decorum. He was described as a lonely, sick boy. In response to her more rigid expectations, john staged minor rebellions by refusing to closely adhere to Catholic religious duties or follow household rules. He kept a messy room, dressed sloppily and arrived to meals late. Despite Rose's strong commitment to teaching neatness to her children, john struggled. They had a daughter, rosemary, who was diagnosed with mental retardation by the time she was five. It was clear that her physical and cognitive development was abnormal. She could not feed or dress herself, had limited speech and could not keep up with the physical activities of her siblings and classmates. Rose gave her extra tutoring. She dedicated her time to avoid sending her to a home for the feeble-minded, and the other children were attentive and kind. Rosemary could never get beyond a fifth grade level in writing and math. She was very clumsy and struggled with basic executive functioning. In her early twenties she had tantrums raging at caretakers who tried to control her and turned violent. A modern assessment would likely have diagnosed her as having autism spectrum and ADHD. In the 1940s and 50s, parents of children who had cognitive impairment, or mental retardation as they called it back then, were often ashamed of their children. The strongest genetic correlation for autism appears to be ADHD, which would make sense when we look at the Kennedy family. Autism awareness and understanding were not at our modern sensibilities and support. I will be doing a podcast series coming up, taking a deep dive into Rosemary's life with the help of the New York Times bestselling biographer. This is especially salient because many autistic people also have chronic centralized pain conditions. Let's get back to John F Kennedy's life. In his junior year in high school, he developed severe health problems. He went to the Mayo Clinic for a month where he had extensive testing and was diagnosed with spastic colitis, which the doctors initially thought might be peptic ulcer disease, and treated with a diet of rice and potatoes. He wrote to his best friend that nobody could find anything wrong with me. He would stay awake thinking about it. He underwent a rigid sigmoidoscopy which also showed a normal rectum. As with Rosemary, they were determined to hide his medical problems, fearing that it would diminish his future career aspirations. I wonder how many of you have had to hide one of your chronic, invisible illnesses, whether it's fibromyalgia, chronic fatigue syndrome, autism, adhd or others and can relate to John F Kennedy's family's decision to hide it? I hope this podcast can and has been a resource to let others like the Kennedys do not have to hide their conditions in shame, but instead can confidently work with their medical team to help them live a better, healthier, less fatigued and painful life. This is where we are going to end this week's episode. We will continue to learn more about John F Kennedy's health problems, where we learn more about his centralized pain syndrome, conditions like chronic back pain, chronic prostatitis, chronic fatigue and chronic pelvic pain. Until next week, go team Fibro.