Ignorance Over Lyme

I still feel surprise whenever someone contacts me with a story about a health care provider discrediting a lyme diagnosis.  From hospitals only giving out two doxycycline pills when a patient comes in with a tick and bulls eye rash, to doctors denying that lyme even exists!  It is maddening how hard it is to get adequate treatment for an obvious new lyme infection.  It is so easy to treat if you catch it early on!  It is malpractice, as far as I'm concerned, not to take a new infection seriously.

Despite the constant surprise I feel over the ignorance of our medical community.  I was caught off guard again, recently, at the ignorance of the general population of our country.  I have become so accustomed to being around people who know what lyme is and understand it's devastating effects on someones life, that I didn't realize a large portion of our country had no clue how serious and prevalent this epidemic disease is.

Although sad that Debbie Gibson has had to suffer from chronic lyme disease, it is a relief to have yet another celebrity stand up and go public with their struggle.  The first feeling I had when I read the People article about Debbie Gibson's struggle with lyme was validation.  Once again, a public figure shares their experience of misdiagnosis, multiple doctor's appointments and tests with no answers, negative lyme test results and eventually a trip to a lyme literate doctor to find out that yes, they actually have lyme.  Not only that, but she also can testify to recovering and getting her life back after long term treatment.  How long can doctors keep denying this disease when person after person has the same story?

When reading Debbie's story on various media outlets I got a glimpse at what it's like to be a celebratory.  I expected comments on the articles to be supportive.  Instead, people insulted her, made fun of her, and accused her of trying to get publicity.  There was a complete lack of empathy over what she has suffered.  Even worse, I realized that those who were commenting didn't even understand the seriousness of lyme.  One person stated, "what's the big deal, my dog has lyme".


I realized that it isn't just the medical community, politicians, and media outlets we need to educate.  We need to bring awareness to the general population.  No wonder this disease isn't on anyone's radar as a disease to be concerned about.  If Debbie had come out saying she had been treated for cancer, the general response would have been different.  Our society is well educated on that disease.  It seems obvious to me that educating the general population will eventually lead to policy change.  We are losing if we aren't sharing with the public the horrors of this disease.

This leads me to my next thought.  I have also been surprised, and slightly discouraged, by the number of people who stay silent about their diagnosis.  On one hand I get it, when you are sick you don't want to deal with negative feedback, controversy, or even having to explain over and over again what lyme is and why treatment is so complicated and expensive.  On the other hand, if WE AS LYMIES don't speak up, who will speak for us?  I know it's hard, believe me, I'm sick too!  I just figure if I want things to change, then I need to do everything I can to help facilitate change.

The good news is, articles like the one People did on Debbie opens up a diagloge about Lyme.  Even though the comments at first were negative, when I look again today, I saw lots of lymies had spoken up and there were lots of responses from people expressing their surprise and concern that lyme was such a big deal.  Even if we are educating one person at a time, people are slowly becoming educated.