Lately I’ve been struggling with honesty. Not honesty like lies, but honesty in putting forward personally what having Lyme is like. I don’t like to be negative, play a victim, or be that person that has nothing else to contribute but there’s so much more to Lyme than feeling bad and to pretend its all about positivity and strength isn’t telling the whole story.
Today, I had to watch my Mom head out on a road trip by herself that was planned for the two of us. All I had to do was get to Pennsylvania, attend one dinner and get home and I had to admit that I could not even do that. As she leaves, she assures me that she is not mad or upset in any way but as she drives off the overwhelming familiar feeling of being a failure is as strong as ever. These feelings come when I lost my job, I lost the ability to drive safely, every birthday I’ve missed for friends, every family event I’ve forgone, etc etc. All things that were not a choice but I had to admit.
People who don’t live this ask me why I’m not used to this yet. Honestly, I don’t think anyone can get used to feeling like a failure. No matter how many advances in Lyme you make there will always be a certain amount of things you can’t control. Instead of getting easier, its more like rubbing salt in a continuously opening wound. I think Lyme patients can all agree that the emotional pain from losing control over your choices is far worse than the symptoms.
Why I love people with Lyme and fight so hard for change is because these people still stand up and fight back after days to years of this. While I can be honest that I will always fight back and I believe I have done everything I can do to live the best life I can, I also have to be honest that I feel like a failure every time Lyme takes a piece of my life.