Thursday, September 27, 2012


Over the last few months I have changed my openness that never surrounded my symptoms. You see, I feared that if people saw how weak I truly was (I must pause to move to a safer, softer place as i feel im about to pass out....)

30 minute later..
I was scared that if I let people see the severity of my health problems they would only see my symptoms and I would fade away. I never wanted to be the sick girl or someone who you couldn't count on to do a job or show up when a friend needs help, but realistically, that is where my body has place me right now. I wouldn't say that I lied, I just kept some things to myself and shared on a need to know basis only. The more the symptoms grew and intensified the more isolated I began to feel. I looked around and people didn't believe anything I was saying. Apparently I was starved for attention (the wrong kind, the kind you get when you lie). In all honesty, I am starved for attention. The right kind. I don't enjoy staying home all day barely able to get up to feed or bathe myself. Don't worry, I am not asking you to bathe me. But having people want to see me feels good. A text or Facebook message can make my day. I don't know if I am... I don't know if I did something wrong... but I feel as though people have decided I am not worth their time. It makes no sense. If I did something to hurt them or you, I will gladly have a conversation about it. I will work to become a better version of myself. I cannot do that unless I am told what I did wrong. (Not trying to get out of anything here, but my memory is soooo bad. I do genuinely want to change my habits for good.)
I know people have misunderstood symptoms as me being (insert seemingly random negative adjective here). I am sorry I am not able to control my symptoms. Once this disease is understood by people who don't have it, I hope people will more easily forgive things over which Lymies have little to no control. 
What does make me happy is when someone messages me and asks to come by to see me. Oh boy, this makes my day! I know (I hope you can understand) that this visit will thoroughly exhaust me. It is ok! I can plan accordingly. 

So this entry has ended up being about something completely different from when I started because I literally just now remembered what I had set out to write before my body so rudely interrupted. Oh yes, openness. It is a terrifying thing. Even to people who aren't fighting a disease and a social stigma that follows it. Human don't like being vulnerable, and yet, it is so incredibly necessary. Without it we lose the ability to connect and empathize. One look at our society full of escapism, and one can easily see that we do anything to feel something (or not feel anything) as long as it doesn't pertain to us. Sickness is scary. Being young and chronically sick is also scary. I don't know how many times I have heard someone say, "but you're so young," when they find out my basic symptoms. This is hard to hear, but the sympathy is recognized. I kept (mostly failed) my symptoms hidden from people for as long as I could. At the same time I was developing my sense of self and how I interact with other humans. I realized that I had few meaningful interactions because people didn't understand who/what I am. I know I am not my Lyme. But I have been chronically ill since childhood and it hardened me, making me cynical about true and open connection in relationships, both romantic and otherwise. This is not something I enjoy about myself and I am working hard to be honest with myself about my physical and neuro disabilities so that I can, in turn, be actually, truthful with others.  I was scared of what they (disabilities) meant to define me. What other dreams might they steal from me? So I ran. I ran hard. I ignored symptoms. If I didn't acknowledge them, might they fade away? After all, I have been told countless times, "it's all in my head." So hold said head up high, ignore the pain and carry on just like my peers. 

But it was never and could never be just like my peers. As adolescents, we want nothing more than to fit in. I did everything in my power to do so. People still saw me pass out on a regular basis or saw the terrifying tremors. What they never saw or would never know about were the hidden pains. The high levels of constant pain in my left shoulder.  I would wait until I was alone to cry out in pain and fear. Migraines that last days would become a blessing when compared to the one that lasted over 4 months.I sat through lectures in college with sunglasses on. In one particular class I had what was later explained through lyme, a then incorrect dx of a partial stroke. I lost movement in my left side. I remember my left hand moving without my control and then nothing. I kept taking notes. The Prisoner's Dilemma.  That was the lecture subject. And while my body held me hostage, I fought with every fiber to keep going. Even if my keeping going was to sit for another 30 minutes and then ... I honestly don't know what I would have done. Thankfully, being the nerd who always sits up front and shoots her hand in the air, my professor noticed something was off and helped me into the hallway. From there I called for the disabilities van to take me to the health center. See, way not normal. 

But as my health declined past the worst I had experienced and continued to fall throughout the summer. I realized that my hiding would likely get me killed. I choose to open up to friends and family. Some of them accepted what I told them and some didn't. Lyme truly caries a social stigma. There are all sorts of legal issues surrounding treatment. The CDC guidelines don't even begin to cover it all. People strangely distrust the government in many ways, but believe everything the CDC has to say on Lyme. So I get branded a liar or attention whore or a hypochondriac. I lost many people I thought were friends, but the amazing individuals who stepped up with me when I chose to fight these bugs are true friends and I am so blessed to have them in my life. 

The lesson here, Kids, is not to hide who you are or what you're experiencing. People who belong in your life will stay there. If everything is based on a lie, the relationship desperately needs a change for the health of both people. If you cannot handle the truth of people's lives, you need to spend some time with the truth in your own life and heart. It will be hard, but well worth it. 


  1. I have a book on openness, vulnerability and connection if you're interested in reading it. I got 10 copies of and am slowly handing them out to people.

    1. Adam, that sounds very interesting. Thanks!