People

I talked to my brother yesterday and he asked about my blog. I haven't written in about a week. One, because I had a friend in town and was distracted and consumed by that. And two, because I have been struggling over whether or not to write about some of the things I'm struggling over. After a talk with my incredible brother, I remembered that the whole point of this blog is to talk about this experience in a raw way, to show other people what it's like, and to help anyone else who may be feeling the same way. So no topic is off limits. That was the idea. That's the rule here. So here I go, in my discomfort.

Illness of any kind is kind of a weird dichotomy. It pulls some people closer to you while simultaneously scaring others away from you. Some people care and want to know how you are, other people don't care at all and can't be bothered to even ask. This disease is a teacher in more ways than one. It's teaching me about the importance of self care. It's teaching me that I'm worth healing. It's teaching me about limitations. It's teaching me how to be gentle with myself. It's teaching me how to be in pain, but not suffer. It is also teaching me how to decide who to keep in my life and who not to. I have a very limited amount of energy these days. This shines a light on how valuable that energy is and the waste in placing it places unworthy of it. People can be really insensitive. I believe that they really just don't know what they are saying or doing, so I forgive them for it. I have enough on my plate, so a side of resentment doesn't need to stay. But, for sake of examples and sharing, I will share a few moments I've had since getting sick.

• I have had people I really consider to be in my tight circle of friends not even acknowledge the fact that I have been diagnosed with something that is really scary and life altering for me. Or for some, except, by sending me a handicapped emoji.
• I had one friend ask me if you "get Lyme disease from humping deers".
• I had one friend, upon seeing me sick for the first time, immediately reduce me to a clothing size and then express how my "recent weight loss" made them feel fat.
• I had one friend compare my inability to have children to their lack of a boyfriend.
• And, my all time favorite is the friend who, on a day that I was in less than good shape (covered in a Bartonella rash, puffy eyes, limping, my cat was ill with an abscess, I was exhausted, etc., etc.) look me in the face and say "You know Lyme disease is an STD, right?"

The last one is one I really want to deal with. First of all, even if it were, what is the intent on saying something like that to someone who is ill? It played it's role. I immediately felt horrible, overwhelmed, confused, ashamed, scared, worried, etc. Now the truth is that there is some speculation about this concept, but no proof, no studies, no data to back it up. The thought is that often couples get sick, so maybe... But for as many couple who are both sick, there are as many couples where only one person is sick. Couples also go on the same walks, live in the same areas, travel to the same places, so obviously are susceptible to the same bites. Entire families get sick with this disease. Entire neighborhoods. The tick does not have to stay on you for 36 hours, it doesn't have to be a deer tick, it isn't rare and it isn't hard to get. Those are all fallacies. There is thought that other insects than ticks are now carrying the disease, but that is not an absolute. I guess because they have also discovered that Lyme can transmit in utero that there may be other possibilities as well. I called my dear friend Jenn, who also is sick with Lyme disease, on the East Coast and told her how upset I was. She told me that she had a similar experience. While sitting in a chair with an IV in her arm for a treatment, a guy said something very similar to her about it being an STD. She, of course, felt terrible, panicked and contacted her Doctor (A top Lyme specialist in the country) who quieted her concerns and assured her there are no studies that give this thought merit. My doctor, whom of course I immediately contacted as well, said it is a complete unknown and if I'm worried about sexual activity (which I'm not) I should be more concerned about being susceptible to getting something from someone else, since I have a compromised immune system.

I am doing my best to stay strong, but this is overwhelming to say the least at times. For me, that day, I just couldn't add this element to the disease. I just couldn't. It brought up old feelings of shame, inadequacy, isolation, you name it. I suppose those feelings came from childhood. I have worked hard to quiet them. I got bit by a bug. I got poor medical care because the medical community and people are uninformed. I now have a disease that is possibly fatal. That is all. If there is an aspect that turns out to be that I can make someone else sick because of that, I will do everything in my power to be responsible so that no one else ever has to feel this way. Of course, early detection and this is not even an issue, so there's that too. Anyone in my life that I would want to have an intimate relationship with, will know all about me and any concern they should or shouldn't have. I don't need to feel ashamed or dirty or wrong. This disease has a huge potentiality for self blame and doubt WITHOUT this aspect. Years of being told it was psychological, the deep depression it causes, being told the pain is in your head, misdiagnosis after misdiagnosis, everyone telling you constantly 'Well, you look good' when they hear that you are sick (so it must not be real).... it goes on and on. It's a struggle in your head, heart and body to just get through each day. I refuse to take this aspect on as well. As my brother said so eloquently yesterday " Fuck em ".

Remember that people can be careless with their words and actions. It's human nature. It has no reflection on who you are. It's more them showing their own fears through projection. No matter who you are, what you're fighting, or how you 'got' it, each day we walk through these battles and 'dis-eases', we are braver and stronger.