It's hard to be wrong. But it's harder to be right, and have people think you're wrong. It's frustrating, it's isolating, it's demeaning, it's (add the adjective that applies to you). For almost 2 years now, I've had to deal with the naysayers in my life.
I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances. I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.
I left that appointment frustrated on a number of levels:
1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason! Watch Under Our Skin. Learn about why Elizabeth May has introduced a National Lyme Bill. Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis. (Though this is never practised.) Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S. Do you think ticks stop at the border? Well, of course not! Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.
2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works? Why do you still not believe? I was SO sick, and now I'm well! Do you think this is all a coincidence? Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?
3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away. Wrong. Wrong. Wrong. The antibiotics cleared the infection, and my brain chemicals returned to normal. My physical symptoms were not caused by anxiety. Again, read up on neuropsychiatric Lyme. The information is accessible to all.
As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me. I thought about the online Lyme community that I have become acquainted with. There are so many people going through the same thing. We are in this together, and we are a great support to one another. I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme. These LLMDs as we call them, go out on a limb for us every day. They do what they do despite what other doctors think......and we all know what most other doctors think! I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed. I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme. (See the CanLyme website.) I thought about my colleagues who have signed the petition I have posted at work. I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness. I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature. I thought about God, who never left me, not for a moment, during those months of agony. He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.
I did a lot of 'thinking' this afternoon, and it has helped.
Lyme patients need to develop a thick skin because there will be plenty of opposition along the way. Keep looking straight ahead and forge on! Find that support network and draw them close. Learn to let the negative comments roll off you.
You know you're right, and one day you will be vindicated.
