Mckenna is a friend I met on Facebook through mutual friends. She was in the process of being diagnosed when I met up with her for lunch. I was amazed at the differences in our symptoms but also similarities. Her symptoms were more neurological, but she was also having depression and anxiety symptoms. She has experienced much more denial with Lyme Disease than I have, so I have asked her to share her story. She is a Lyme Warrior.
Although there are many, one of the most difficult aspects of this illness that has most presently been on my mind is how darn controversial it all is. Never in my life did I imagine I would be the victim of a chronic illness, and especially not of one where there are those who don't acknowledge its existence and rather tell me that it's all in my head or that I'm faking it all for attention.
I began experiencing symptoms from my Lyme disease mid-June, 2014. (My symptoms are mostly neurological - twitching and spasms originating in my left arm and leg that resemble symptoms of epilepsy and MS.) We went to doctor after doctor, took test after test, and nothing. Since no one could figure out what was wrong with me, my primary physician figured that I had Conversion Disorder, where too much stress and anxiety manifest itself physically - a disorder that can be cured with therapy and the right medication. I spent months on this "treatment" with no improvements, because it wasn't all in my head.
I now have a much greater understanding of my disease and how to handle my symptoms, but before we had a diagnosis, we really hadn't a clue the best way to respond. I now know that when I have a seizure or have a difficult time breathing that they are all symptoms of my Lyme disease that will eventually pass on their own. Before my diagnosis, however, an episode of seizures or breathing problems often brought us straight to the ER, not knowing what else to do. When they couldn't find anything wrong, they again would dismiss me with instructions to see a therapist, settling that it was all in my head. Right after my husband and I started looking into Lyme disease, I had another episode that landed me in the ER. When the ER doctor finally got in to check up on me and after Sam explained about my possible diagnosis of Lyme, the doctor pulled Sam outside of the room and told him that I was crazy. He said that Lyme disease isn't real, that I was just having an anxiety attack, and that I was just faking the seizures to get attention.
Even after I was diagnosed and my illness finally began improving with the treatment, I ran into controversies. My sweet sister and brother-in-law have the best of intentions, but they read some anti-Lyme information on the internet and were concerned that my method of treatment was bad and dangerous to my health. When I told them that my symptoms have actually been improving with my treatment, they suggested that it could be due to a placebo effect. I know they didn't mean to, but that really hurt me because that once again suggests that all of this is just in my head. I've never been one to enjoy the spotlight much and feel I can be credited as a an honest, reliable person. With that, you can believe that I'm not making this up or faking anything for attention.
Lyme is not in my head, it is a real life disease that is doing things to my body. I just pray that someday, that fact will be universally known.
-The Lyme Warriors
Read more about this Lyme Warriors story on her blog at http://makennawhitworth.blogspot.com/2015/02/where-in-world-did-this-come-from.html?m=1