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

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

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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.

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