It’s been almost 36 hours since my story ran on Action News about my battle with Chronic Lyme Disease. To say that yesterday was a whirlwind would be an understatement. I received many emails, text messages, blog replies and Facebook notes that were so touching and kind. I really appreciate how everyone has reached out to show their support in my time of need. What amazed me is that there were so many people who didn’t even know that I was this sick. I guess I did a pretty good job at hiding it. It’s a shame that I had to do that.
In hindsight, I will tell you that it was a very difficult decision to go public with my story. First of all, I am a very private person. I am the type who utilizes every blocking feature possible on my Facebook page, I didn’t even know how to “tweet” until yesterday and I have an unlisted/unpublished phone number. I chose to keep my illness a secret for the past six years because I didn’t want to be treated any differently than anyone else. When the opportunity presented itself to do the news story, I figured that I might as well use my curse to help other people who have been stricken with this same illness.
There are people with Chronic Lyme Disease suffering all over the world right now and they don’t have a voice. When I opened my Facebook page yesterday, I discovered that another woman with Chronic Lyme had passed away from the disease. It is so frustrating to hear news stories that say this disease is “not fatal” or it “only happens in the Northeast” because that is not true! We are out here struggling to survive day by day, living in poverty because our insurance companies will not pay for our care and we are dying.
I have never been one to run from a challenge or shy away from hard work. It was time for me to put aside my desire for anonymity and step out of the shadows to educate the public about this horrific disease. I only hope that by telling my story that I will be able to help the Chronic Lyme community. I hope that my willingness to take a chance on putting myself out there will bring some support to the thousands of people who are suffering in silence around the world.
Thank you Action News, Erica Bennett and all of you wonderful people who have taken the time to read this blog to find out more about Chronic Lyme Disease. Please continue to check back and I promise to keep writing about what it is like to view the world through my Lyme Lens…