I’ve been in the “Lyme world” since I first contracted Lyme disease myself in 2008. I, like many people in Lyme, had to fight hard to get a diagnosis and once I attained that five years later, I had to fight like I’ve never fought to reach wellness! After my battle, I couldn’t ever walk away from the people who were still fighting themselves. I don’t think I felt like I had much choice at the time, it was something that just engulfed me. But perhaps, the real reason was because there was so much left to do, and it was a place in the world I felt like I could make a difference. I became a constant advocate for Lyme awareness and support for a group of people that were at such a disadvantage in the medical world and in basic understanding amongst their peers and family as far as knowledge and understanding of this disease.
I’ve spent over a decade sitting in support groups or on the phone or computer with people greatly affected by this disease. I’ve sat with parents who lost their children, I’ve said goodbye to friends whose battle proved to much. I’ve experienced the many injustices of struggling with an unknown, unacknowledged and silent disease. That frustration was a big drive for me and only made me more determined to improve things. In large, its why “New Hope Lyme Center” exists!
In the last 5 or 6 weeks I’ve heard a lot of concern from patients and friends about the COVID-19 virus and how it may affect those in the Lyme world. It’s a valid worry. How will this effect my health? Am I more susceptible to COVID-19? Are Lyme patients immune suppressed? If I’ve recovered from Lyme disease am I still susceptible? Should I stop my Lyme treatment? How can I keep my loved ones safe? Frankly, we don’t know all the exact answers to all those questions yet. Like many of you I’ve read the research, I’ve listened to the experts, I’ve talk to the doctors who are treating both. I’ve learned about what supplements everyone is recommending and other immune building therapies and the proper safety measures to take to help prevent the spread of the disease. Enough that it made my head hurt! However, in the process of all that, I came to realize something interesting and pretty amazing. Though knowing the resilience of the people of Lyme Disease, not surprising.
After years of being at a disadvantage in so many ways, I’m discovering as I’m visiting with the patients of Lyme that for once we seem to have an advantage over some of your “non Lyme” friends and family in many ways! I know it seems unbelievable so let me explain. In a time when the world is in a bit of a panic because they are dealing with so much “unknown” many patients I’m talking to are calm! At first this surprised me, as I said I was getting a lot of calls but, these people were not panicky. I was a part of their own research; they were checking in to see what I knew and of course I passed all information along and they did the same for me. This is a common theme amongst the people of Lyme. For years we’ve been forced to advocate for ourselves and now, we’re really quite good at it!
The more I talked to everyone the more I was reminded how strong and resilient we are! This is something I’ve known for many years. Some of the strongest most undaunted warriors I know are Lyme warriors and that’s a fact. Here’s what you all have taught me about the advantages someone dealing with Lyme disease has over the average person in a world dealing with the pandemic COVID-19.
1. Some one who is dealing with chronic Lyme disease is very accustomed to dealing with a monstrous disease that generally people don’t know much about. They don’t panic. They’ve been doing that for years with no help from the government and no help from insurance companies, and most of the medical field. This new threat is being handled with an attitude of calm research and decisive decision making. Business as normal as far as any “Lymie” is concerned.
2. Lyme people know how to take care of themselves. They know how important it is to build up their immune systems. They know how to eat healthy and feed their bodies healthy supplements. They listen to what their bodies are telling them and they do their best to give their body what it needs. They know when they need help and when they can handle things on their own.
3. Lyme people are used to isolation. This is a sad but true fact in the Lyme world. We know what its like to have to stay home when we don’t want to. We know how to deal with a very small circle of people who understand us. We can and many do work from home or have even dealt with losing work because of sickness. We know very well what it feels like to stare out the window wondering what it would be like to have friends again? These are not going to be new feelings or conversations in any person’s life who has been dealing with Lyme disease.
4. In general, people dealing with Lyme disease are good with a tight budget. Most of their medical bills aren’t covered so they have learned to go without, they have learned to make the hard decisions in the financial department and not only that, they make it work, week after week, month after month, and in some cases year after year.
5. Lyme people are already smart about other germs. How many of you already had your own face mask raise your hand!
6. The people in Lyme know the value in reaching out to an isolated or lonely friend. They have been that person, they will not stand by and let someone else suffer in such a way. I swear, I’ve seen an entire group of people tune in to the one in the room who needs it most. It’s an incredible gift that most don’t even realize they have.
7. Anyone whose been dealing with a disease as difficult as Lyme disease is mentally tough. That matters. You don’t walk a road like that without some grit. If you didn’t have it when you started, you developed it along the way. The other day I actually had someone say to me “Lyme has been trying to kill me for years, it hasn’t got me yet, and neither will COVID-19.” We know the fear of the unknown, but we don’t let it rule us. Strength to the core.
So, there you have it! Seven things that you already understand very well! Now I know there is some added stress because of this Pandemic. Believe me I feel it. But you are a warrior are you not?! I challenge you not to forget your strengths. There are many! You can use them to help your neighbor, or to remind yourself on a rough day that you can do this! That this time, like many other tough times you’ve made it through, will pass! It will pass.
But in the meantime. Be smart about what you already know. Boost that immune system, get rest, eat well, and wash those hands like you’ve dipped them in a fish tank full of deer ticks! Put on that mask, think of it as a superhero cape and use everything Lyme disease has taught you to conquer this new challenge. Let’s show the world how it’s done, I know I’ll be proud!
Advantages that will help Lyme patients thrive against COVID-19
