Lyme? Not Lyme?
So I received this shortly before I left for volunteering work.
No. This is not great news. This was supposed to confirm my diagnosis, not thrust me back into the land of the undiagnosed. My mind immediately started spinning. What the hell. Why did it come back negative? This is the most sensitive test out there. How can I not have Lyme? Nothing else makes any sense. Should I call my GI doctor again? I just saw her and told her we were moving. I just wasted half a year thinking I had Lyme. But this also explains why I feel like I can’t relate to people with Lyme disease, and why antibiotics made me worse and not better.
Then the anxiety monster roared to life.
Maybe I’ve been making this all up.
I read somewhere that you should think of your anxiety as your panicky friend. It provides some distance from the feeling so you don’t feel like your brain is trying to rip you in two. But sometimes the anxiety monster is just too big.
My overactive neurons have given me the rare ability to convince myself that three years of suffering and missing out on food-centric activities that dominate our culture was simply a product of my own imagination. This is where I fall down the rabbit hole. I start to believe that I have to prove that these feelings are real. I become consumed with research, changing diets, reviewing test results, anything and everything that I think might have a chance at actually fixing me. Then I can point and scream, “There! See? It was REAL!”
When you doubt yourself, you come to believe that no one else believes you either. Every helpful suggestion becomes an attack. You go to every doctor’s appointment ready to go to war. You think it’s you against the world when it’s really you against your own mind. Most people genuinely do want to help you, but you can’t see it because you’re on the warpath, thinking you’ve got something to prove.
When I have those moments of self-enlightenment, I laugh because I remember when my brother and I used to grab each other’s arms and play “stop hitting yourself” and laugh like crazy every time. Only I’m “voluntarily” punching myself in the face and then blaming everyone else around me.
I’d like to believe that this situation is unique to me. But unfortunately that is not true. I’ve cultivated a community of “spoonies”, some with mental health diagnoses and some without, who regularly get told by doctors that it is all in their head. When the average time to get a Lyme diagnosis is 5 doctors, it’s no wonder people start thinking they’re going insane. Add on top of that the fact that every one of those doctors probably said “it’s all in your head” or “it’s just stress”, the rabbit hole starts to look pretty enticing.
I wish I could say that I am an all-powerful, self-assured and confident in my diagnosis. But I’m human. My adopted uncle, one of the most kickass people I know (Hi Scott! Love you!), told me once that it’s okay to have a bad day as long as you don’t let it turn into a bad month. So fall down that rabbit hole, look around and realize what you’ve done, and climb back out. A few times my mom has dragged me out, kicking and screaming. That’s okay too.