Monday, March 25, 2013

The Very Hidden Sweet Side of Lyme

My typical day shall continue later. Provided that I remember to do so. Sam joking said he should write that part. Instead today I want to talk about the Lyme community.

We are hidden. We are hurting, lost, hopeless, lonely, confused, and discarded. But, and this is a big but, we have each other. The day I found that there were others who understood what I meant when I said, "I feel like I have fish nibbling at the back of my forehead," brought about a big change. You and I both know that the fish thing sounds a bit weird crazy, but that's just it. This disease and its lovely friends bring about so many odd physical sensations. It is only reasonable that our minds would create an image to attempt to explain them.

Beyond symptoms, we help each other through the changes that chronic disease brings. Many are abandoned by friends and family for a variety of reasons. We feel useless and unneeded.

Just like any other path through grief, you can see the stages in fellow Lymies. Denial. Though this one usually happens before one finds the online communities. Sometimes even long after passing this stage we hit it again anyway. I thought to myself the other day, while trying to force my body to sitting position, "I can't have Lyme, must be something else. I am going to work today no matter what and prove to them I am ok." Guess what. I am not ok. I did make it to the bathroom and back but that was pretty much my day.

I am not going to detail the Lyme experience through all the stages here. I am sure most of you have some familiarity with them. But just in case, I will list them. Denial. Anger. Bargaining. Depression. Acceptance.

The depression one is the worst. It is generally accepted that the leading cause of death from Lyme is suicide  I don't want you to think that these people have done anything wrong.Suicide by Lyme is still death by Lyme. Sometimes I feel that the most evil part of this disease is that it rarely kills quickly. It takes years. (Some die of organ failure.)

Now that I have all of that explained, I can get to my point. This is one thing that fills me with hope more than anything else. Lymies, no matter how bad they feel themselves, will always talk a depressed or anxiety ridden peer down off the edge. In doing so something special happens. Something so uniquely human. We might not even believe ourselves in that moment that our own (physically miserable) lives are worth it, but we convince someone else that theirs is. And do you know what? By the end of the crisis, we are all saved for one more day.

Lyme is horrendously ugly. So are it's friends. The steal dreams and happiness from each person they infect. But I have found that for everything stolen, from a career path to a friendship, something sweeter, deeper, and meaningful takes its place. For when an individual is stripped down to her core, she discovers what is most important in life and can finally let go of the meaningless fillers.


  1. this is nothing but the truth and if i didn't have this disease myself i would never get this post at all.. this disease works havoc on everything people have no idea how horrible this disease really is.. great job describing this nightmare Erin glad we have fellow lymies out there working for the cause..

    1. Thank you so much, John! You are such a key to our communities. You do an amazing job.