Lyme Time with Paula Jackson Jones

Know better, do better

Posted:  Tuesday, January 2, 2018 - 7:00am
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American poet, writer and activist Maya Angelou wrote, “Do the best you can until you know better. Then when you know better, do better.” As we look back over time, we can see where “knowing better” has brought about the “doing better.” Take the automobile, for example. Just look at how far we’ve come from Henry Ford to the Ford corporation today. Technology is another change. We’ve gone from hard wired phones to cellular, computers to tablets. I could go on, but I think you understand my point.

Maya Angelou wrote about firsthand exposure to trauma and discrimination, finding her voice and character strength under the thumb of opposition. Being an African American woman during a racially charged era, it was not easy to speak out, let alone speak out with inspirational words of encouragement to those in similar plights.

As an advocate, my focus is first and foremost to the patient, getting them connected to necessary resources and supports. I take time to talk with them about their struggle, answering questions and providing direction and guidance by sharing my own personal journey. Much of what a chronically ill patient goes through, dealing with a tick-borne disease, is a foreign concept. My other role is fostering education to medical providers. As a former patient, now advocate, it is not always easy to find your voice or the courage to speak the harsh truth especially after trauma.

A lot has been learned about Lyme and tick-borne disease since first being discovered over 40 years ago. For example, what we thought we knew then scientists have since discovered that the 5,300-year-old Ice Man named Otzi was also infected with the Lyme bacteria.

Medical change is another “know better, do better” example. In just eight short years, from my tick bite to today, so much has changed. The acknowledgement from the Centers for Disease Control (CDC) about unreliable testing, the recognition of new tick-borne disease strains and the introduction of newer protocols all support the “know better, do better” movement. It was during my journey that I realized not all medical providers, and even specialists, were the same. I’ve written about ‘who you see determines the level of care and outcome of your recovery’ and I still stand by that statement. I interact with medical providers all over the state of Maine who either continue to operate as they always have or once they knew better, made the choice to do better, partaking in additional education to get up to speed on the growing epidemic that so many Mainers are exposed to. I am seeing an integration of services, medical providers working together for the betterment of their shared patient. I am hearing back from patients who are seeing a change in how their primary care provider approaches a Lyme patient.

As a Lyme patient who was traumatized by her experience with the medical profession, I made a choice to use my voice to inspire others, while take a stand for change. There are many who are angry, who need to lay blame and hold others accountable for their physical, mental and financial hardships that they endure. Once I knew better, I choose to do better. Am I angry about what I went through? Of course. I lost so much but I choose to focus on what I gained and use that to help others. I didn’t want my suffering to be in vain if I kept it all to myself or lashed out. I wanted to make things better and easier for those who found themselves in a similar plight.

Access to medical providers, testing, treatment and financial assistance now exist but there are still those who refuse to “do better” even though there is scientific-based evidence that “knows better” available at their fingertips. Why? Why the choice to ignore what is “better?” One common answer I get when I respectfully ask them Why? is “our office policy follows the CDC protocol” to which my response is, “Then you do know that the footnote at the very bottom states that adherence to these guidelines is voluntary and not intended to supersede a physician’s knowledge or individual patient’s circumstance,” right?

William Osler, a Canadian physician and one of the founders of John Hopkins School of Medicine, wrote “The good physician treats the disease; the great physician treats the patient who has the disease.”

We need to put aside the one-size-fits-all approach to treating Lyme and tick-borne disease now that we know better and to the medical providers who read my column, I would ask this of you, for the sake of your patient “Do the best you can until you know better. Then when you know better, do better.”

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org