The Lyme Spot is about having Lyme: living with it, putting up with it, embracing it, damning it, figuring it out, not figuring it out, but most of's about community. I will be sharing my experience, my feelings, and all the things I know that help me get through my days and keep me feeling positive, or at the very least keep me alive! But please, also come here to share your experiences, feelings and all the things you know. Together, we can get through anything...

Spreading Awareness is KEY

I just asked a man to not sit so close to me because he's wearing a fragrance and he argued with me about it for 5 minutes. Of course, I was getting more lightheaded and woozy with every passing second. He seemed to not believe me, but not so much out of incredulity as out of an anger that it was going to stop him from sitting where he wanted to sit. I painstakingly explained to him that I'm sick and am allergic to everything in the environment and that I'm pretty much allergic to everyone, as well as that I had already asked two other people not to sit so close. His response was, "I don't understand anything you are saying. None of it makes sense." I apologized many times and said, "I'm so sorry, I can't help it or change it. Being near other people's clothing and perfume makes me very sick. I don't like it, but I can't do a thing about it." So then he started walking away and I said, "Thank you for your understanding." He turned around and came real close to me and said angrily, "I don't understand shit. Everything you say is bullshit." He moved toward me in an intimidating manner, as if to hit me, but didn't. Then walked away.

It's not that I think spreading awareness will stop this sort of thing from ever happening again. There will always be people in the world who feel that their desires are more important than anything else. However, I do think it will cut down on the rate that it occurs, and on the intensity of reaction. Even when people don't fight with me about it, there's often a palpable feeling of confusion and suspicion emanating from them. I know this comes from the fact that it's hard for them to believe that I'll get sick from allergens on them when they sit 5 feet from me, but not if they sit 10 feet from me. And I admit, it's extreme, and it's not so much their fault because when we get sick, we try very hard to hide it. We have good reason. When we tell the truth we have to weather judgmental reactions at the very least, and reactions that border on violent, like the one I just dealt with. However, our silence perpetuates the societal norm that creates these reactions. It will only change if we change it, and we can only change it by speaking up.

It is not easy, especially when you are sick, to fight for yourself. I have not been asking people to sit farther away from me for the last 6 years. For most of the last 6 years, I would move. It's only been a few months now that I've advocated for myself this way. Before then I didn't think I was important enough and I was afraid. Before then didn't consider a compassionate response as a possibility. I assumed I would get a negative, compassionless response every time. It turns out that is not the case. It turns out, if I give my fellow humans a chance, 50% of them have quite a bit of compassion, 45% of them will begrudingly do what I ask without a word, and only 5% of them will respond aggressively. I'm, of course, guestimating with these percentages, but you get the gist.

Life is about collaboration, and the incident today made me realize that the human public cannot collaborate with those of us who have Environmental Illness because we have not clued them in to what we need.

You know what I think guys? I think we need to get loud, and not just a little loud, but Margaret Cho kinda loud! So talk it up people, talk it up! We have needs that are entirely possible to meet, and damn it, we are worth getting them met!

1 comment:

  1. That is crazy! Some people are so rude! I'm happy he didn't hit you! Can you imagine? I'm sure it was bad enough to be spoken to like that! You are right, we need to get loud! VERY loud! I'm working on it! Here's hoping you are feeling better by the day...