Lyme Aware

My first thought when I saw the headlines of how Yolanda was given the ultimatum not to speak of Lyme disease in the Real Housewives of Beverly Hills was sadness and then anger.  Eventually, it was understanding.

Since back in 2002 when my life was brought to a complete halt from Lyme disease, I have seen many Lyme sufferers come and go from the spotlight so to speak.  Many weren’t celebrities; they were just the average Joe or Jane.  They wanted to raise awareness so that others wouldn’t fall into the same fate. However, it’s difficult to live with a chronic illness! Whether it is chronic Lyme disease, diabetes or heart disease. But, I truly feel that those with chronic illnesses such as Lyme disease have a much more difficult time. We don’t get the support, recognition or understanding like those with diabetes or heart disease.  It’s almost as bad as those that have mental illnesses such as depression.  We’re treated like lepers, and many of our friends and family don’t want to hear about it anymore.  Not only do we struggle with a disease that supposedly doesn’t exist, but we deal with being able to live with it and survive without being able to speak out so that others know that it’s no picnic. 

Yes, in the beginning, some of our family and friends get the support because they can see that we are really struggling.  But, with time, that support ceases and some disappear while others begin to wonder if you really are sick and it’s not all in your head. Or, they question if you really are suffering from chronic Lyme disease or some other illness.  Eventually, you are left to decide whether you want to continue speaking about it or continue with life as best as you can. 

For some of us, those of us that have been luckily enough to get healthy enough to work, we have to ultimately decide whether working and sustaining a long-term job is more important than raising awareness and offering support and understanding to those that continue to struggle and remain ill because they are dealing with chronic Lyme disease all alone.  It’s a very difficult position to be in. You want to help those that are too ill to speak up; but, yet, you want to live as normal a life as possible.  It a double-edged sword. 

At the same time, you are struggling with your inner conscience on that aspect; you are seething with anger because again and again you see someone silenced because the public doesn’t want to see the good, bad AND the ugly or controversial. Over and over again, chronic Lyme disease warriors and survivors are slapped in the face with the “it doesn’t exist” and “it’s all in your head” or, “it’s just a ploy for attention.”

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” – Dr. Kenneth Liegner

I’m getting very tired of waiting for the day that those that deal with chronic Lyme disease will get the same recognition as those with AIDS.  (AIDS was very real and so is chronic Lyme Disease.) They, too, once were shamed, ridiculed and ignored while many of those that were ill continued to die.  I’m tired of seeing Lyme warrior after warrior dying knowing that they were thought of as crazy and ridiculous. Discarded by society feeling as if they didn’t matter!  

 

Sidenote:  I am so very happy to hear that Yolanda is publishing a book on her battle with Lyme disease! The forces that were just worried about ratings didn’t stop her completely.