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  • Lyme Lens

Almost got it right...

I was blessed to be interviewed on the local news to get the word out about how Chronic Lyme Disease can ruin your life. The crew that came to my house were fantastic. They were kind, understanding, took their time to listen to everything that I said and were always so careful that I wasn’t in pain with every little thing they did. They showed great concern to make sure that I wasn’t over-doing it and that the sun wasn’t too much for my headaches. The main reporter, Erica, had been in contact with me for over a month and I was thrilled that she was able to keep her bosses interested in getting the story told. I had high hopes that the interview was going to air without any misinformation because I was putting myself out there, exposing my personal privacy for the greater good, in order to inform the public about this heinous disease.

Imagine my disappointment when the last sentence that the news anchor threw in was that the “risk of getting Lyme Disease in our area (meaning the south) is pretty low.” I was immediately deflated. He went on to say that Lyme Disease primarily exists in the Northeast and the Upper Midwest which is just UNTRUE. After giving such a wonderful report by Erica and her team, the rest of the news team had to add in the false information from the IDSA (Infectious Disease Society of America) that this disease is difficult to catch in certain areas of the country. It crushed me. The IDSA are the exact group of people who are making it so difficult for us to get any treatment throughout this country and the world. They are at war with a group called ILADS who are the doctors and scientists who are studying Lyme and Chronic Lyme extensively in order to get us the help that we need to save our lives.

We are fighting to get the word out about the severity of this disease and when we finally get the opportunity to reach the public, there always seems to be that one statement which negates the entire message of the otherwise perfect interview. So, here is the link to that interview once again and I ask you to watch the piece but ignore the last comment by the anchor at the end because it is completely FALSE. Chronic Lyme Disease exists all over this country and people are suffering horribly from it.

I did this interview so that the public will know that we are out here fighting this battle alone. We often don’t even look sick so you would have no idea that the person walking next to you in the grocery store is in debilitating pain as he/she is pushing that cart full of food. You wouldn’t even realize that the person you are glaring at who just pulled into the handicapped parking spot and got out of their car without a walker or cane can barely breathe to make it into the pharmacy. You have no idea that the person you used to sit next to in church hasn’t been there for the past few months because they are now bedridden with an IV in their arm receiving home antibiotics around the clock and can’t walk to the bathroom anymore without holding on to the wall.

Thanks to Chronic Lyme Disease our lives have been changed forever. Getting the word out to the public was such a great opportunity so I could possibly save someone else from what has happened in my own life. I wanted people to know that our health insurances are not covering our treatments, we are too sick to continue working, we are losing our homes due to lack of finances, we are losing our savings to pay medical bills, we are losing our relationships due to the strain of years of illness but worst of all… we are losing our lives.

So, I appreciate Erica Bennett and her willingness to do the story on Chronic Lyme Disease. I am grateful that she came into my home with her compassionate team and spent almost two hours really experiencing the life of a person who suffers with this illness. I just wish that I could have stopped them from using that false statement at the end of the broadcast. I didn’t know how the interview was going to look before it aired so it was a complete surprise to me as I watched it along with everyone else that tuned in that night to watch the broadcast. I only hope that the bigger message got through.

We almost got it right…until that last sentence. In the meantime, I will continue to fight to get the word out. If my story can save even one person from ending up with Chronic Lyme Disease, then it is worth telling.

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