Thursday, January 6, 2011

Close Encounters of the Lyme-Haters Kind

Ever since I was a little girl, I've always marched to the beat of my own drum. I've never been one to conform to a crowd. It's fair to say that I'm usually pretty comfortable in my own skin. However, there is something that has been happening lately that makes me more and more uncomfortable: brief (though not brief enough for my liking) encounters with condescending doctors and nurses who look down on me for my diagnosis of Lyme disease.

Yesterday my asthma, which has been pleasantly quiet for the past several months, reared its ugly head and I ended up needing to make a visit to Urgent Care. The nurse who checked my vitals wasn't interested in chitchat, which was fine with me since I wasn't feeling well. However, as she started verifying my long list of current medicines, she had a difficult time hiding her disgust. "You're on doxycycline?? And plaquenil? AND zithromax??!" "Yes." "AND you're on blah, blah, BLAH?!" "Yep." And with that, she turned her snooty butt around and walked out the door and didn't even say anything more to me! No "thank you", no "the doctor will be right with you." Nothing. To this lady, I might as well have had the plague.

Now, the proper thing to do would probably be to just let this slide by. But like I said, I've never been good at going along with the crowd. I can't stop thinking about this lady and how close-minded and hateful she was (maybe you had to have been there). With more and more cases of Lyme disease and its co-infections on the rise, when will this hatefulness stop? Sadly, I don't think it will until Lyme disease strickens more influential people. Imagine what would happen if Oprah had Lyme disease? Or Hillary Clinton? Or fill in the blank ______?

I never asked for Lyme disease. And I certainly never asked to be thrown smack dab into the middle of one of the most controversial diseases around. Why would I ever want that? I can't sit quietly and let all the physical pain I've endured over this past year go to waste. I want my story to be heard. I wish people could walk a day in the shoes of someone with Lyme disease. For now, the closest I can give you is this, which was actually written on a good day. Some days my body hurts too much to even get out of bed.

I sugarcoat a lot of my disease on this blog, because who wants to read a depressing play-by-play of unending pain and agony? But I'm letting the cat out of the bag: Lyme disease is the most pain I've ever known in my life. What a smack in the face to be treated like an outcast for having this disease! It was certainly not the first time someone has looked down on me for my disease, nor will it be the last. Would you be brave enough to go against the crowd and speak up for yourself?


  1. Yes, I would be brave enough. And I think your blogs, and other blogs like it, help give others the courage they need to accept their diagnosis and fight for the treatment we all deserve. And the respect we all deserve.

    You're right, you do have to be there to know what it's like to be slapped in the face with medical elitism, for lack of a better word. To know the utter humiliation and rage it sparks in the person, sitting on an uncomfortable table, to be mocked for refusing to deny her diagnosis. It takes a long time to let something like that go. If I knew how, I'd offer it up. If I figure it out, I'll share.

    Until then, thanks for the posts--"sugar-coated" or not. Sometimes it's nice to share something positive amidst all of this pain, which I think sadly in the Lyme community we all take as a given.

  2. Thanks for the encouragement, Lymeland. It's so nice to hear from someone who truly understands what it feels like!