This is the first forum that I have posted on. I admit that I "lurked" before I had my diagnosis to see what others were feeling with this disease. I recently started posting because I do have some questions that others couldn't answer. I leave the docs office and always 4 get a few things.
I think Lyme is so hard to have. It is bad to have it and even worse with what we have to go through to get help figuring it all out. Some of us look fine, but we have a raging infection that is not visible on the outside. Our friends and family are concerned at the beginning and then they don't want to hear anymore. When Lyme is mentioned you can see the look on their face change like "here we go again."
They will ask us..."how are you?" and you hesitate to give the truth in fear of sounding like a broken record. So you just start saying "fine." The only place that gives us a sense of security is our doctors office. We know when we tell him our shoulder hurts he is not going to tell you "it's the weather.". He knows what you have and you don't feel you have to convince him. It's a strange sense of comfort that someone truely cares.
It is that reason why we "lurk" on these forums and sometimes post a question or experience. We feel we will not be judged. Like so many of our friends and family members do. A friend of mine went through treatment for cancer and for one year never had to make a meal. A person with Lyme barely gets a phonecall let alone a dinner.
I think life is hard enough without suffering from a chronic disease. I think if you are going to post on a forum you should do so for the right reasons. No one should read a response and say to themselves "that wasn't very nice.". We're not school kids...we are just looking for support and answers. If you can't give that then you should not participate.
I think someone who is not being to kind may some day be in need of support and there will be no responses. My advice...play nice in the sandbox or people are going to stop coming to the park to play.