Sharing Our Lyme Disease Stories

Here's a little reminder about where we're at, and why I'm so open about my story with Lyme Disease. This blog that I've been keeping over the past four years, isn't anything special. My pageviews are a drop in the bucket compared to many other Lyme bloggers. But that's not why I've continued blogging about Lyme. These are the countries where visitors to my blog have come from so far this week. To little old me, this is pretty amazing. Some of these visitors might just be curious, and perhaps others stumbled across me by accident. But most of these have come through specific internet searches - like Google and Bing - because they are desperately looking for information that might help them in their quest to discover what's happening to them, and how to get help. I like to look at things like this and remind myself why it's so essentially important for all of us to start sharing our stories.

Many times Lyme Disease can be isolating. It can make you feel like you're all alone. Alone to figure out what's wrong with you; Alone to find a doctor that will take you on as a patient; Alone in figuring out how to pay for it all, since it's usually not covered by insurance; and alone to figure out how to participate in and keep your life running as you're watching everything crash in around you. I've been there, and it's not a fun place to be. It can be incredibly dark and terribly isolating. This is why I believe that each of us who has been there in that horrible place, needs to start to stand up. We need to stand and provide others who are still in that place with a light on their path forward. My hope is, that the people within my circle of influence, mostly my immediate family and friends, understand enough about this illness that they can avoid it. But if they haven't been lucky enough to avoid it, I hope that in sharing my story, (sometimes et nauseam,) that I will be able to help someone else avoid this terrible journey of searching - sometimes for years - to find help, and hope.

The other reason that I share my story is that each of us with Lyme Disease can take heart. There are literally millions of people, all over the world, who have walked and are currently walking this path. They know what we're going through in all of these areas, because they've been through it themselves. And the good news, if there can be any good news, is this: the truth is beginning to come out. As each of us, in our circle of influence shares this information, the "truth" about Lyme Disease that we have discovered for ourselves - in the hardest way possible - the actual size and scope of this terrible illness, is going to be fully revealed. I have great hope of that. But we've all got to start talking about it! When I started this blog four and a half years ago, it was to keep a record of this journey for myself, and for any of my family and friends who might be interested in "updates." It's crazy to me that these days, people all over the world are reading my blog everyday. While I don't have huge numbers of readers, I'm hopeful that for the people that do read this, I've done my small part in being a resource, or hopefully pointing them in the right direction to find that help and hope.

These are a few of the reasons that I will continue to try to tell my story to anyone who will listen. I will be forever grateful to my friend - herself a fellow Lyme survivor, along with her husband - who shared her story with me, and suggested that I be tested for Lyme. I believe that she literally may have saved my life. This is why I've chosen to be so public about a fairly private matter. Because the organizations and people that we are taught to trust with our health, well being and very lives, (the NIH, CDC, and mainstream medicine) have NOT taken this seriously, and for the most part are refusing to talk about it, I believe it's up to those of us directly affected by it to get the word out. Think of all the millions of individuals and families dealing with this terrible illness. How many people could we inform and help or protect if each would tell someone else?

The major announcement by the CDC a couple weeks ago - acknowledgement that they have vastly underestimated the number of annual NEW Lyme cases - and that they now estimate new cases of Lyme Disease to be upwards of 300,000 each year in the U.S. alone - was a major step in the right direction. That information is nothing new to those of us in the Lyme community, who have been talking about that number for years...I believe that the acknowledgement is partly due to pressure by all those millions of people suffering with this illness. But there's still so much to be done in fully acknowledging the size and scope of this problem, like the geographic prevalence of cases across the U.S., instead of the isolated northeastern problem it is painted to be. Let's continue to move forward by spreading the word! Who have you talked to about Lyme Disease today?