Sounding the Call: Where Do We Go From Here? (Part 4)

This is the final blog in a four part series.

The physical pain of this journey has been excruciating. However, the psychological pain of the journey has far exceeded any physical aspects. Tick borne illness is a woefully under-appreciated, misunderstood, complex, and unnecessarily controversial space. Most frontline medical providers are not educated on the latest research involving tick borne illness and so most people in our community endure years with no diagnosis or, arguably worse, receive a misdiagnosis. Based on the rapidly emerging peer reviewed literature, any reasonable person would agree that the science of tick borne illness pathogenesis, diagnosis and treatment is far from settled. And where there are gaps in science, it is the patient and their caregivers who are left to fend for themselves. It is in this gap that patients plead for help, in spite of their medical case meeting no defined diagnosis or known test.

What does a patient do when all the known tests come back negative? What do they do when every specialist rules out their specific bodily system as the cause? What does a patient do when they bring their doctor emerging literature to consider only for it to be outright ignored? What does a patient do when their primary care provider refuses to give another referral? What does a patient do when prevailing medical guidelines don’t specifically address their unique case? What does a patient do when insurance procedures interrupt the sanctity of the doctor-patient relationship? What does a patient do when they are not afforded the right to give ‘informed consent’ to a novel treatment? What does a patient do when they are told they can’t possibly be physically sick? What does a patient do when they are told it’s ‘all in your head’? What does a patient do when their Invisible Illness frustrates the medical profession so much that they literally give up on the patient?

When I fell severely ill, literally fully disabled and dependent on caregivers for my activities of daily living, I was told multiple times by multiple doctors that I was, “not actually sick”. It was suggested countless times that the cause of my physical problems was due to stress and being overworked. I was told to eat healthier, go to the gym more, take naps, take a vacation, or take a hot bath. I saw doctor after doctor after doctor. I remember one neurologist looking right past me, only talking to my husband and suggesting I needed to be on some medication to help alleviate my stress. I remember a rheumatologist who told me, and I quote, “you’ve been a successful woman in a male-dominated career field for far too long, maybe it’s time for you to retire.” Days turned into weeks, weeks turned into months, and months turned into years. All the while an undiagnosed bacterial and parasitic infection was ravaging my body. To be sure, mental health diagnoses can be directly related to physical manifestations. That said, science has also proven the flip side of that coin is also true: undiagnosed physical illness (in my case an infection) can manifest with associated mental health symptoms. Doctor after doctor told me that the symptoms I was experiencing could “not possibly be real,” that somehow, I was misinterpreting the physical signals of my own body, that I was misdescribing them, or making them up. At one point, I was actually called a ‘malingerer’ by military medicine (ouch!). Despite all of this, deep inside of me there was that nagging voice that kept saying “keep going, don’t give up, you’re not crazy, there is something wrong in your body.” And so, I forged on, step by step, doctor by doctor, and day after day.

Because I went misdiagnosed for so long, and disbelieved by too many, the infection eventually manifested by the summer of 2016 as a lesion on my brainstem. I woke up and was temporarily paralyzed, unable to speak or move, for a little while (whether it was seconds or minutes, I don’t know). When I was finally correctly diagnosed by the doctor who saved my life, she quickly exclaimed “you need treatment right away, you need IV antibiotics right now, we have to stop this infectious lesion on your brainstem.” I’m glad to say treatment worked at stopping that lesion and eradicating the infection, but too much time had lapsed and my body has paid a dear price for that. I have long term sequalae (permanent damage) from the misdiagnosed infection, that has left me with enduring Invisible Illness. As I mentioned before, I have to manage daily: chronic fatigue, persistent joint and muscle pain, neuropathy, executive cognitive dysfunction, autonomic nervous system dysfunction, and a balance deficit… just to name a few. But, to you, I look ‘fine’.

I stand on stage as a motivational speaker now, in front of thousands of people at a time, sharing my story… and I look ‘fine’. I’m trying to change the perception of Invisible Illness, one person at a time. I honestly thought an accurate diagnosis and treatment would be the end of it, but I now realize it was just the beginning of my journey with Invisible Illness. I’m not alone on this odyssey, there are so many like me. I choose to be an ally for them, choose to break down the stigma alongside of us.

The next time someone talks to you about their Invisible Illness, no matter how unbelievable it may seem, please sit back, listen, and take it all in. You just might learn something, like my new gastroenterologist did. My scars are slowly softening, some are even fading away, and I’m more hopeful than ever that together we can change the conversation surrounding Invisible Illness. Let us join forces to bridge the gap between medical providers and patients when it comes to Invisible Illness. Let’s raise education, awareness, acknowledgement and compassion. You might just save a life, and it may very well be your own.

Please join us at Invisible International in our intrepid efforts to harness innovation and education to eliminate the suffering and marginalization of Invisible Illness for the betterment of society.

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Air Force Officer & Pilot First, Recruited by a Tick Second (Part 3)

This is a four part series that will be published throughout July 2020.

Sign up to participate in the hackathon Educate & Elevate by August 1.

I was recruited into the world of Invisible Illness by a tick. Yes, a tick. Before a tick bite ended my military career, I had been an Air Force Officer and fighter pilot with over 21 years of honorable service to our nation. I’m also a proud wife and a doting mother to nine-year-old twins. Prior to my complex illness, my personal life and military career had been nothing short of extraordinary. I am a combat proven F-15E fighter pilot, I commanded an Air Force Fighter Squadron, I had flown as a pilot with the U.S. Air Force Thunderbirds (the first woman pilot to do so), served as a White House Fellow, and was an advisor to the First Lady of the United States. I had even run a marathon while in good health. I was physically fit, mentally fit, and emotionally fit… and then it all unexpectedly came crashing down. A tick bite changed my life forever.

I can remember the exact moment I knew something was very, very wrong. In the summer of 2012, I’d seen my doctor about a growing rash on my right hip. At the time, nobody discussed tick borne illness, nor had I ever heard of it in a substantive way. I was given ten days of antibiotics and a topical cream. Within a month I was having fevers, a general feeling of malaise, and some painful paresthesia. A few months later the neurological symptoms began to manifest. I distinctly remember that day and I want to share it with you: I was leading a formation of F-15E fighter aircraft back from a training mission over the Atlantic Ocean. It was a beautiful day, not a cloud in the sky, and we were proceeding with the routine approach back to our home base in North Carolina. Despite the crystal-clear conditions, and my feeling perfectly healthy that morning, I was overcome (in an instant) with an overwhelming sense that my aircraft was turning left, though it was not. We are trained on how to handle vestibular issues which we know can manifest during flight through weather or at night. It made no sense that I would be experiencing vestibular issues on a perfectly clear day and during straight-and-level flight. As I tried to process what was going on, the air traffic controllers were calling me on the radio. I could hear them telling me which direction to fly and to change altitude, but I could not activate my radio switch to answer them. I literally could not get my hands to activate the same switch I’d activated thousands of times, including during high stress situations like combat. After what seemed like an eternity, and follow-up radio calls from the air traffic controllers, I managed to get my hands to work. Once the switch was activated, though, I could not speak. It was a simple radio call for a heading and altitude change, but I could neither find my routine words, nor get them out of my mouth. Lucky for me, I was the commander of the fighter squadron and this was an all-Instructor formation. I passed the lead to my experienced wingman who led us home. For good measure, we had the Instructor Pilot in my jet perform a back-seat landing that day. The next day I returned to my doctor quite scared by what I’d experienced. This would be the start of my medical odyssey, one in which me and my family found ourselves desperately in search of a diagnosis and treatment.

Repeated doctors’ visits yielded no answers, no diagnosis, no treatment, nothing. Prior to my telltale erythema migrans (EM, or “bullseye”) rash in June 2012, I was perfectly healthy. Within weeks of the EM rash, my health would begin to decline, thus beginning a year’s long journey of neurological deterioration. Following a subsequent documented tick bite, and a CDC positive Lyme Disease diagnosis in August 2013 (14 months after my first EM rash), my medical issues grew exponentially (in spite of treatment) and sprouted to impact every single system in my body.

It would be 1,525 days between my first documented rash in June 2012 and my accurate diagnosis of late stage, neurologic, Tick Borne Illness in August 2016. This equates to 4+ years of suffering from painful and debilitating multi-systemic issues. I saw 24+ doctors across eight specialties and received multiple misdiagnoses along the way. My misdiagnoses included ‘potential’ Multiple Sclerosis, Autoimmune Diseases, Endocrine Dysfunction, and Fibromyalgia. I endured countless needless, painful, and costly medical tests. By the time of my accurate diagnosis and start of treatment in August 2016, I was unable to speak intelligibly, I could not read or write, I could not walk more than a few steps safely, I was bedridden on average 22+ hours a day, and I had major problems with my cognitive function, to include severe memory problems, confusion and dementia-like symptoms. I was unsafe to be left alone. I could not play with my children, care for myself, or interact with my husband—who had to be both caregiver and single parent during the worst of my illness. While I am grateful that I was never suicidal, there were times I would have welcomed death. I thought I was tough as a combat-proven fighter pilot, but tick borne illness destroyed me, brought me to my knees, and ruthlessly broke me.

I would spend two years in intense treatment, including IV antibiotics, high dose oral antibiotics and antiparasitic medicine, vestibular rehabilitation and physical therapy, all to climb my way back to the level of independent function I have today. During this recovery period, I was predominantly bedridden for the first nine months of it and mainly housebound for another year. I was rather unceremoniously medically retired from the military in the midst of all the medical chaos. My career was literally ‘gone in the blink of a bite’. Overnight I lost my career as an Air Force Officer, I lost my identity as a fighter pilot, I lost my means for providing for my family, and I lost my independence. Along the way, I lost a lot of ‘friends’ and most of my social network disintegrated before my very eyes. To the outside world, I had literally become Invisible.

Understanding the Full, Complex Reality of Invisible Illness (Part 2)

This is a four part series that will be published throughout July 2020.

Sign up to participate in the hackathon Educate & Elevate by August 1.

I firmly believe the vast majority of medical providers go into the medical profession for all of the right reasons. They work hard and they sacrifice to gain the education and skills needed to save lives, to alleviate pain, and to offer compassion in the hardest of circumstances. Sure, there are always going to be rare outliers, as there are in any profession. I also firmly believe that the vast majority of patients are speaking their reality as factually as they can, giving descriptions of a body and mind they’ve intimately known their whole lives. And again, there will always be rare outliers who may find ways to abuse the support of the medical system. But, in the big picture, we have patients with medical needs and providers who took an oath to help. They’ve dedicated their lives to helping patients and they truly want to help. It’s been my observation (having been a medical mystery myself) that modern medicine is perfectly suited to handle acute cases, and almost always works overtime to unearth the causes of more complex disease. Modern medicine has also come a long way in helping to manage many forms of chronic illness and to not just cast those patients aside as we had in the past. Yet, there is one area of healthcare where there is a giant disconnect, an abyss between patients and those whose help they need: Invisible Illness.

By definition, Invisible Illnesses cannot be easily seen or observed, are not often measurable or easily quantified, and they challenge contemporary paradigms of medical understanding. Invisible Illness can affect body or mind, and most often, both at the same time… the body and mind entwined in perpetuity, one impacting the other, symbiotic. Invisible Illness frequently leaves patients feeling alone, isolated, often embarrassed, and even sometimes ashamed. Invisible Illness can evoke negative reactions from others that leave a patient in a constant state of defensiveness and chronic stress. Invisible Illness leaves patients with the unease of cognitive dissonance, where the very profession they are called to ask for help leaves them feeling abandoned (both real and perceived) and judged, all because they don’t fit a current diagnostic definition or have specific results on a currently accepted test. Invisible Illness does not discriminate; it can impact anyone at any time to include the most vulnerable amongst us, including our children. Invisible Illness is a disease of the strong, the active, the busy, and the accomplished. When unacknowledged, Invisible Illness can give birth to, or exacerbate, mental health symptoms like anxiety, depression, and hopelessness… all of which can manifest in the most disastrous of consequences.

Like most survivors of late stage tick borne illness, I’ve had to cross the Rubicon into the world of Invisible Illness, never to go back, and I’ve been left with the scars of a fighter. These are the scars that slowed me from going to the Emergency Room for an emergency appendectomy, because I worried my medical history would not be believed. These are the scars that prevented me from telling the medical provider everything, because I knew I looked ‘fine’. These are the scars that let the tiny voice in my brain generate self-doubt and ask, “is it all in your head? Maybe you should give up seeking an answer for your disabling symptoms.” These are the scars that had me wait nearly a year to see the above-mentioned gastroenterologist with new onset symptoms because I was tired, so tired, of the undignifying nature in which I felt I always had to defend my medical history and my Invisible Illness symptoms. These are the scars that have seen me lose friends to the stigma associated with Invisible Illness. Those scars are especially deep and they were preventable and remain unacceptable.

These are also the scars that have led me to reinvent myself as a professional motivational speaker and to serve as a patient advocate for others with Invisible Illness. These are the scars that find me serving on government boards and providing public testimony at the highest levels of government in order to shift the conversation surrounding Invisible Illness. These are the scars that drive me on a daily basis to give voice to the voiceless and to join forces with those who do the same. These are the scars that recognize world-class healthcare providers and great patients must work together to bridge the gap in the understanding, acknowledgement, and acceptance of Invisible Illness. These are the scars that recognize our frontline medical providers, especially in the era of COVID-19, are humans too….and deal with their own Invisible Illness. These scars remind me that when it comes to Invisible Illness, we are all in this together. These are the scars the led me to accept the honor and responsibility of becoming the Patient Advocacy Chair at Invisible International. This is my Invisible Illness story.

Sign up to participate in the hackathon Educate & Elevate by August 1.

On Being Seen: A Relief of Burden (Part 1)

This is a four part series that will be published throughout July 2020.

As I left the doctor’s office last week, it was nearly impossible for me to hold back the tears that were welling up in my eyes, threatening to drip down my face…in public, no less. I kept telling myself that fighter pilots don’t cry in front of people, that we are tough, and that we must keep a stiff upper lip. I was somewhat comforted by the fact that any tears that might flow would be absorbed by the face mask I was wearing due to the necessary precautions of the current COVID-19 pandemic. Those tears were not appearing for the reason you might be expecting. I did not receive some life altering diagnosis and I had not received any bad health news. In fact, it was arguably the most memorable and productive doctor appointment I’ve had in years. So, why the tears?

You see, the reason I was feeling palpably overwhelmed with emotion was because this particular doctor, a gastroenterologist, had just spent about a half an hour of her time actually seeing me.  I don’t mean going through the motions of what has become the all too common, often transactional and time-constrained, modern day, medical appointment. I mean that she really saw me. She welcomed me to her office with a profound grace, as if I was the most important patient she had witnessed in years. Her questions demonstrated tangible compassion and an avid curiosity about the reason for my visit. She asked about my symptoms without interrupting me, took copious notes as I spoke, and not once did I feel her rush the conversation towards its inevitable end.

And then the moment came. Yep, that moment. The moment I dread every single time I go to a medical appointment, where she understandably had to ask about any significant past medical history. I immediately squirmed in my chair, my discomfort unmistakable, and I let out an audible sigh of defeat. Yes, defeat. I don’t know what other word to use to describe it. I’ve been in this position too many times before and I know how this usually ends. These appointments can so often culminate with some level of disbelief by the medical provider, sometimes a noticeable suspicion of my motives for being in their office, a look of “this is too complex for me, please dear Lord get me out of this,” or at its worst, a complete and overt condescending dismissal of my everyday reality.

I have lived with a life changing, and life altering, Invisible Illness for roughly the past 8 years. When you look at me, I look ‘fine’. By all outward appearances, I look to be a physically healthy and fully functioning middle-aged woman. But, I am not ‘fine’. In fact I’m far from it. As someone who lives with an Invisible Illness, every single day is a balancing act between what my body and mind can and can’t do at that very moment. If you want me to quantify it (as doctors so maddeningly always do), I am able to accomplish about 50% of my old activities on my very best days today. My old self is gone, forged into this new human being who is trying to do her very best with what she has.

Each of my actions is a tradeoff between what I choose to show the world or not (do I wear make-up and force a smile today?) and what priorities I can juggle versus let fall (should I go to the grocery store or work on my home-based business?) My Invisible Illness means fully letting go of my old self and accepting the reality of my current capabilities (since I can’t read well anymore, I guess I’ll switch to podcasts). How do I reinvent myself today — do I take another Zoom business meeting with a potential client or do I concentrate on some form of self-care? How do I choose what to prioritize today — a shower or a nap? How do I get this poor gastroenterologist , bless her heart, to understand, accept, and believe what I have to manage daily: chronic fatigue, persistent joint and muscle pain, neuropathy, executive cognitive dysfunction, autonomic nervous system dysfunction, and a balance deficit…just to name a few.

I summarized my 8-year medical odyssey as best I could for her. I explained, as efficiently as I could, my Invisible Illness and its current symptoms, and I finished by describing the new symptoms which had brought me to her office. To my surprise her eyes had not glazed over, she had not lost interest in the details of my story, and she met the end of my minutes long, mini, verbal-novella, with a profound statement. She said, and I quote, “Thank you for educating me on your illness, you have absolutely taught me something new today about your prior diagnosis and I’m grateful you’d share that with me. You are certainly enduring a lot each day, so let’s see if I can relieve you of some of that burden.

Wait, what just happened?!?! I felt like I had entered the Twilight Zone, but in a good way. Angel harps played music in my head, the light of the sterile examination room appeared as a halo above her head, and I imagined her as some sort of magical unicorn. In that moment, she had lifted a huge weight I’d been carrying all alone for years, she removed any shame and embarrassment I had let my Invisible Illness bring me, and she gave me back my medical and healthcare dignity… all of which had been stripped from me many years ago. She made my Invisible Illness visible… she saw me. You see, I left that gastroenterologists office last week with tears in my eyes because a medical provider chose to see me. In just one doctor’s appointment, I had regained a long lost superpower; I had become visible again.