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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