Reprinted from Lyme Time With Paula Jackson Jones with the kind permission of Paula Jackson Jones. To read the original article, click here.
It’s not easy being an advocate and talking with sick people every day, hearing similarities between your own journey and their struggle and trying to find the right words to not only comfort but to give them hope that they too, one day, can return to health.
That is what life in the gray feels like. Not everything is black and white. We’re comfortable with black and white. Things are what they are. Cut and dry. It’s the gray that is scary, all the unknowns and questions that go unanswered, sometimes for great lengths of time causing you to question everything around you, even yourself. The gray is where the Lyme community tries to figure out how to adjust to their “new normal”, a life filled with pain and migratory symptoms that you’re told to live with, that cause you to cancel your plans at the last minute, a life where planning becomes obsolete and isolation becomes your friend. Why? Because it’s too hard to explain to someone why you’re not getting better when you yourself don’t understand. As a society, we’re accustomed to going to the doctor when we don’t feel good, get medicine and get better. But what happens when you don’t get better? What happens when tests say you’re fine but you don’t feel fine? People avoid what they don’t understand and soon friends and family fall to wayside and you’re left dealing with the gray.
Why does the gray even exist? Why isn’t Lyme and tick-borne disease cut and dry? Why are the tests so faulty and the treatments inadequate? I am asked these and so many other questions all the time and it takes time to explain. Then it takes time to absorb and take it all in because it requires us to un-think the way we’ve always thought. Here is where we find ourselves in the gray as we maneuver through maze, treading hope as we traverse from provider to provider looking for answers that are not always black and white.
In the gray, we walk around in a fog wondering “Am I still sick” thinking that we must be as we navigate through our days feeling sick and full of pain. Too often we are told that we will get better in time. But sadly, 40% of delayed or improper treatment fails and equally disheartening is how many co-infections fail to get diagnosed and treated thus contributing to lingering symptoms that keep us in the gray.
Sometimes, while the infection may be gone, repair work is greatly needed and fortunately for me, my provider not only recognized this at the end of my treatment but stayed atop of it until I went into full remission. Outdated guidelines call this “post treatment Lyme disease syndrome” for which there is no medical direction given for the patient. New and current guidelines tell the provider, once infection is gone, to address the repair work until the patient is no longer sick.
As we embrace the fall season, I cannot stress enough how much our prevention practices need to remain in force ~ skin, clothing, pets, homes and yards. Ticks are still active, even more so now that that cooler weather is more conducive to seeking out their next host. Humans and pets alike need to be protected from the growing tick-borne diseases that inhabit our communities. I often focus on the human devastation but over the summer, dozens have reached out to me about losing their pets to these diseases. The number of new human and animal cases continues to rise and no community is immune to the devastation that tick-borne diseases leave in their wake.
There is a saying in the Lyme community worldwide ~ YOU DON’T GET IT UNTIL YOU GET IT ~ Don’t wait until you have it to do something about it!! We need to remain vigilant against the tiniest of dangers that cause the unthinkable ~ death, divorce, financial despair, bankruptcy and even suicide. The gray needs to be addressed head on. Tailored education so that every patient exposed to a tick-borne disease gets the same level of care that a cancer patient would be given. That the doctors in endemic regions would recognize and have the most up-to-date tools and resources for diagnostic and treatment purposes. So that fewer and fewer would remain in the gray and more and more questions would be met with answers and put to rest. That illness would subside and health would return.
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If you’re in the gray, contact us. We have resources, we can help ~ www.mldse.org
Paula Jackson Jones is a survivor of late stage neurological Lyme Disease complicated by four co-infections (Babesia, Bartonella, Rocky Mtn Spotted Fever and Erlichiosis) that were misdiagnosed for over 18 months before she connected with a Lyme literate provider ~ she was doctor #24 and she forever changed Paula’s life.
Paula then began a journey that she didn’t understand but quickly learned and discovered that she has a passion for supporting and educating others. In May of 2014, she co-founded and became the President of Midcoast Lyme Disease Support & Education, which has been a full-time, year-round job for her. She enjoys sharing her personal experiences and what she has learned on this journey with others, afflicted by or looking to prevent tick-borne disease exposure.
She has overcome many hurdles in her lifetime, from domestic violence to addiction to chronic illness and has chosen to use her experiences to help others, revealing her scars, sharing her personal story and showing them that they too can overcome.
She is a dog-loving, optimistic #Lymestrong extrovert who can do anything she puts her mind to and she loves connecting with people! You can learn more about her and her work at: http://lymetimewithpaulajacksonjones.blogspot.com/.