Imagine for a second that you are in pain constantly and have no idea why. You go to doctor after doctor telling them you’re in pain but they do nothing for you. They run some inadequate blood tests and say you look fine. Yup, on the outside I look fine maybe… if I ever leave the house. I might even get out of my PJs and put on some real clothes and brush my hair. I’m articulate, and I used to have a great way of somehow making everyone around me feel like everything is a-OK. I don’t like to be the elephant in the room. The one nobody wants to talk to. The one nobody likes to have a conversation with, because it might be awkward. But it almost never fails.
I see people I know and I feel like a glowing billboard for the people who know what I have and what’s going on with me. Nobody knows what to say, so nothing is really said. The topic is avoided like I have a shameful secret or something. There’s no “can I help you?” or “What can I do to make things easier for you and your family right now?” There’s just disbelief, and uneducated ignorance. But how can you blame them, really… The non-Lyme-literate doctor’s office is often the same way. Bring up Lyme and the subject changes quite quickly! You learn to never bring it up like it’s taboo.
So, when you have Lyme, you may feel abandoned, which makes you think you must not be worthy of the respect and treatment people with other medical conditions get. You start to doubt your own diagnosis. You wonder if treatment will ever fix you and this haunts you, mostly at night when the insomnia kicks in.
People don’t see you in your home. Crying into your pillow in pain, out of guilt for not being able to be the best Mom you can be. From failing as a wife and Mom every day. They don’t see how many pills we take just to try to feel better. How much money it costs us and how much stress we are under. They don’t see your stressed out spouse who comes home from working his full time job, tired but having to do all the work I feel like I should have had done while he was working. The guilt, the pain, the emotional and physical torture. The loneliness.
Chronic Lyme is like having someone slap you in the face over and over and telling you that slap will eventually make you feel better. Treatment isn’t exactly a cakewalk. Herx reactions are the things nightmares are made of. We really are, in fact, warriors. Superheroes even. Every day we wake up, breathe air, try to feel better, try to make it thru another day so we can try to fall asleep… and do it all over again, indefinitely maybe. We are superheroes. Not many people could do what we do, for so long.
Let’s start giving ourselves some credit. And let’s become a community of support for one another. Nobody gets better by themselves. They say it takes a village to raise a child… well I raised two kids without much of a village besides my hubby. While sick. I say it takes a superhero to do that. And it takes a village of superhero Lyme warriors and their loved ones to make it through all of this madness. Let’s open those proverbial doors, fellow Lymies. Let everyone see what’s really behind our closed doors. The more they know, the more we can work together to help people with Lyme feel like they can do it. Be open about your illness. Share, educate, and let’s open some minds. Together we can get through this. One day at a time…