“Hindsight is 20/20” is a saying coined from the mid-1900s, a phrase meaning the clarity that someone has about their past decisions and/or actions. It’s the act of looking back over something and understanding how it could have been said or done better.
It’s taking the experience that was done and trying to alter the trajectory with personal experience, knowledge, and education so that the next time around we can gain a different outcome.
As someone who spends a great deal of time with chronically ill patients and their families, I’m constantly trying to educate by using my own personal journey to reduce the number of medical visits and out-of-pocket expenses.
If I were to tell you one thing about tick-borne disease that I learned on this journey, it would be this: No two patients present or respond the same. Meaning I could line up hundreds of patients with a tick-borne disease and their symptomology and response to treatment would differ greatly.
Not all patients will have neurological symptoms, not all will be bedridden with chronic fatigue and debilitating physical pain. Not all will have to quit their jobs. Not all will lose relationships. Not all will struggle with financial losses. But it will happen to many patients and with many layers of severity.
Add in co-infections and waters get muddier. Trying to diagnose a patient with multiple tick-borne diseases is not easy, and the longer a patient goes with a misdiagnosis, the harder it is to treat and recover. The simple reason for that is because a systemic infection that was allowed to spread now introduces a secondary infection (brain, liver, gallbladder, heart). It is these secondary infections that complicate everything.
Medical providers who are not knowledgeable in tick-borne disease do not have the clarity and understanding of how devastating and chaotic an untreated infection can be. And with their limited knowledge, they chase the symptoms down the rabbit hole, handing out misdiagnoses and treatments that just don’t work.
Recently, I read several blogs by patients who were referencing “hindsight 20/20” — if only we knew then what we know now, how different the outcomes of our stories could have been. What if I had been properly diagnosed and treated at that first or second visit? I never would have stumbled my way through a medical field of landmines, where I was given dozens of misdiagnoses and spend hundreds of thousands of dollars to remain sick. All the personal losses I faced, from my job to friendships…
How does one recover from that?
You take what you know, what you’ve learned and what you’ve experienced, and you share it in hopes of making a difference in someone else’s life. I thought my journey to health and wellness was a difficult one but the journey as an advocate has been equally painful. Mostly because I have the clarity and understanding now that I didn’t when I was sick.
I see the looks on people’s faces, I hear the whispers, I get the hate mail and Facebook attacks. I’ve been accused of “rocking the boat” and “stirring the pot,” of getting patients riled up over something that most medical providers feel is not a big deal. Well, I am here to say that Lyme and tick-borne disease is a big deal, and here in Maine, it’s on the rise.
So why do I keep doing it? Because all patients matter; no one life is more or less important than the next based their socioeconomic standing. All lives matter, and as a medical provider, I would think that would drive you to do better.
The definition of insanity is doing the same thing over and over again but expecting different results. I assure you that I am quite sane, and that the insanity is knowing that medical providers are continuing to use blood tests that have been proven to be unreliable. Insanity is that medical providers are being presented with various tick-borne diseases in various stages and in this day and age are still not recognizing what they are seeing. Insanity is how many people are still being misdiagnosed and mistreated. Insanity is what families deal with when fighting for their loved ones to get properly treated.
Why? Why are we still fighting so hard and what have we not learned? I don’t understand this. I am fighting harder now than I ever did back when I was first bit. It’s been over 10 years and the fight has only gotten stronger because we know better, but it’s muddied with what we used to know, what our medical providers are telling us, and what we’re reading about. I can’t understand how a medical provider can still deny how dire of a problem this is.
Fact: We live in an era where we are still identifying new species of ticks and diseases that they are carrying. Fact: We are identifying new modes of transmission. Fact: We have a growing list of symptoms for each individual disease and for co-infections. Fact: We have a growing interest from researchers trying to find better, more accurate, and more reliable testing as well as new modes of treatment. For some, we have learned from our past. We have learned that there is no one-size-fits-all approach to treating a tick-borne disease, and yet there are medical providers that are still doing just that.
I am contacted by patients who have visited dozens of medical providers, who received dozens of different diagnoses, and who remain sick to this day. Just this week, I got a phone call from a young woman who called to thank me for connecting her to a Lyme-literate provider, for they finally got an accurate diagnosis for her father. I said, “I’m so sorry to hear that” and she said, “Oh no, we’re grateful that it’s not cancer or a tumor and that he’s in good hands to get the best possible treatment.”
Another woman wrote me an email, excited that their new provider is starting her husband on a new treatment and he is responding very positively. “You’ve given me back my husband,” she wrote. Humbly, I’m just part of the process that is choosing to take what we knew, what we now know, and changing the trajectory going forward, seeking different results, a better outcome.
The Tick-Borne Disease Challenge! For the medical providers who read my column, I challenge you:
• I challenge you to accept that Maine has a serious tick problem.
• I challenge you to partake of the free tick-borne disease educational webinars on our website, mldse.org.
• I challenge you to attend our sixth annual Midcoast Lyme Disease Support & Education conference at the Augusta Civic Center on Saturday, April 10, where you will receive free education on diagnosing and treatment options, meet with labs to learn about available testing, and network with other providers. Admission is free.
I challenge you to help me reduce the growing number of new tick-borne disease cases by supporting free prevention and awareness programs and materials in your offices (contact me).
Now, we can take what we know and continue to operate as we’ve always done or we can accept the challenge to step up and be part of the solution. For those in the community who think our medical providers are not hearing us, I assure you, I have been contacted in private by many providers, seeking to co-care for their patient with a Lyme-literate provider.
If you are a medical provider and you want to learn more about diagnosing and treatment options, please contact me. Let’s do this! Let’s step it up. Let’s work together to reduce the growing number of new cases and reduce the growing number of chronically ill residents due to misdiagnosis.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at paula@mldse.org or go to mldse.org for more information.)
