I read online recently that our culture often times uses Matthew 7:1 “Judge not lest ye be judged” to promote a tolerance that often encourages acceptance of behaviors otherwise forbidden. We have an expectation that is not met or fulfilled by another and so we judge, we criticize and at times, punish or condemn. It’s like having faith. Faith is what you believe, not what someone tells you. There are many different religions who all believe that theirs is the “know all end all” religion that society should adhere to and so they sit in judgement on those who do not worship the same way or the same god that they do.
So, what does any of this have to do with ticks and tick-borne disease? Well, I’m glad that you asked.
Not all medical providers are created equal. But not equal doesn’t mean bad or wrong. It just means not a good fit for you. I’m talking about doctors, specialists and yes, even veterinarians. What they believe and what they know and understand impacts the level of medical care that you will receive. With just this last week, I had a medical provider misdiagnose a patient (previously bitten by a tick) with “house wife syndrome” (is that even a diagnosis?) stating that she was bored and seeking attention and urged her to join a book club or exercise class. I learned from a friend that she was told that her dog had a neurological disorder and that nothing more could be done for the beloved pet, when in fact the poor pup had an ear infection. I myself was misdiagnosed by twenty three medical providers and specialists, believing I had everything from fibromyalgia to chronic fatigue syndrome to MS to Parkinson’s to possibly ALS ~ when my proper diagnosis revealed late stage neurological lyme disease complicated by four co-infections.
Such is the case with so many patients and after spending thousands of dollars and getting misdiagnosed hand over foot, it is easy to see why the Lyme Community is angry and why they want accountability. After a while, the pent up anger is no longer directed at an individual but at a group of faceless strangers who belong to an entity, who are tasked with the well-being of society, riddled with controversy, clouded by theories and a deeply seeded denial. These groups push back to make these patients fell undeserving of the same medical care afforded to other chronically ill patients.
I see the anger from these patients flowing out in verbal attacks on social media as well as in protests. They are demanding change. The status quo is no longer acceptable as more and more patients are succumbing to a disease promoted as hard to get but easy to treat. Really? Say who?
I try hard not to judge but I’m far from perfect. I’m told that I have a right to be angry but what has anger ever solved? Anger grows into violence until someone somewhere has nothing left to lose and decides to act on it resulting in only causing more pain.
People judge what they do not understand. They judge from a place of fear. They judge from a place of ignorance. I have witnessed medical providers interject themselves into a patient’s situation and judge and condemn another provider for trying to help them. I’ve seen slang comments such as “quacks” or reference to medical protocols they do not understand as “quackery”. When did it become ok to attack someone for trying to help another?
The New York Academy of Family Physicians has decided to take a stand and publicly show their support for the tick-borne disease endemic that they are dealing with. So many states could learn from New York’s actions but there is fear. What will it impact? Will it detour tourists? I say face the giant head on and show it who’s boss. I was recently interviewed by a Maine newspaper that has shown its support for Maine’s tick problem but was slow to push and promote prevention and resources for patients. I was proud of how the journalist really listened to me, didn’t judge, just listened and in turn, shared what I said were solutions.
We as a society, whether you’re a medical provider or community member, need to stop judging what we don’t understand and start listening to what the need is. Hippocrates, the Father of Medicine, was considered quite “quirky” in his practice of medicine and treating patients and yet, his is the platform for which medicine stands upon. Somewhere in the twenty-four hundred year journey from the island of Cos in ancient Greece to our modern, state of the art medical facilities, through the advancement of technology and medicine, the interests and goal of the patients and doctors have gone their separate ways and those who continue to spend the time listening to their patients are deemed “quacks.”
Is it quackery to take the time to listen, to care, to sympathize, to get a better understand, to gain input from the patients or does it all come down to the all mighty dollar? Again, no judgement here but if you’re not going to take the time to listen and learn because there is a negative cost or penalty associated by doing so, perhaps we are further off course than we realize.
Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at firstname.lastname@example.org or visit www.mldse.org