I just read lightlifes post that said.....

"I have so much love for all and any of you. 
This is such a lonely disease. No one understands or gets it. 
Take care of yourselves."


And it was perfect timing because i just got into a fight with my boyfriend. This was the topic of our fight -the fact that this is a lonely disease. I basically made him feel like he wasn't there for me (which isn't true- hes been there since the beginning, by my side) but I told him he doesn't live in the constant hell that I do...that he doesn't know how it feels to live your life like this.

Do you guys find yourself pushing away relationships? I feel like I'm making things go to crap between us. But I also feel like I can't help it cuz my health puts me such a dark place. Any thoughts would be helpful. I'm so lonely right now... I feel like you guys are the only ones who really get it.

My marriage was doomed long before I got sick. In fact, I think the stress of it contributed in large part to my illness. But here are a few comments fwiw.

First, I agree that no one understands unless they have it. I don't even understand it myself sometimes. How can I feel so off when I can't even put my finger on the feeling? Much less explain it to others.

But I would suggest explaining to him that it means a lot that he's there for you even while you fight this lonely thing. Because fighting without a caring partner is doubly lonely and miserable. I think people want to fix things and they feel like a failure when they can't. Explain that there's no way he can fix it, but it helps when he does XYZ and that you appreciate the support.

I tell my kids that it's not their fault when I'm in a bad mood or not feeling well. Sometimes a hug from one of them lifts a lot of the darkness.

When Lyme Disease symptoms first appeared in 2002, my wife was supportive. Over the next two years or less, it went from supportive to disdain for having to deal with an "imaginary" problem. That is also the fault of doctors who said the same thing.

I was forced to go to psychiatrists who labeled me as a hypochondriac and placed me on numerous anit-depressents, almost all of which made me crazy (ier . For whatever reason, I am sensitive to most medicines. My ex-wife became distant - in part because I was obsessed with finding out what was wrong and getting well, as I had three young kids. In part because some people cannot handle long-term problems. She could not and left and was so angry she had to deal with it she did all she could to limit time I had with the kids.

It took 11 years to get a diagnosis. Most people who thought I had flipped out then understand it is and was real. The others I don't worry about.

Because of the way chronic Lyme Disease is viewed, and the skepticism the medical world has for it, more people think it is "in your head." Even doctors are trained to be ignorant. But it is a tough situation for both those who have chronic Lyme and those near you. And it's hard not to become distant because the anxiety of not knowing is so great.

There is no manual on how to deal with it, mentally or physically. Hang in there.

Thank you all for your warm thoughts and advice. A few things stick out to me. First runningwild- I cant imagine 11 years without a diagnosis. You are a very strong person for hanging in there and fighting for your health, especially without a supportive wife. I'm so glad you finally put a name to your illness.
Something else you guys mentioned is that the disease consumes you because all we really care about is getting better. It makes me feel selfish (especially because I am a teacher) but i have so little to give to others right now. My mind is devoted to my health. I wake up every day thinking about it and it never leaves my mind.
Dahlias I agree that it helps me boyfriend to have tasks that make me feel better because when I am crying hysterically he always says "what can I do, tell me what I can do to help." I think he gets frustrated not being able to "solve" my problems just as much as I do.
And even though he doesn't feel what I feel every day, his life has been affected severely by this disease as well. I know he has a difficult role being a boyfriend to a chronically I'll person...that can't be easy either.
Girlie I would love to take you up on that hug. I feel you with the not caring about your passions anymore. I hope you get your passion for Christmas back. It is so difficult watching life pass by around us without engaging in it fully. I too want to enjoy all the things I use to.