I hear ya, kaykay. This is a good one to vent about. I wish people wouldn't always go on about how we'll be more tolerant when we get better. I am already too tolerant! As Thoreau said, 'If I repent of anything, it is likely to be my good behavior.'
The fact is we're sick as dogs, and people have a choice, they can try to understand that or not. Most don't try, and what they need isn't tolerance, in my opinion, but a good kick in the butt.
No doubt someone will attribute my comments to Lyme rage. Whatever happened to good old-fashioned OUTrage? You don't get an epidemic like this kept under the rug and trivialized without the help of ordinary people.
I tend to think Lymies are often too meek. We stifle our anger, we internalize other people's doubts about the reality of our illness instead of challenging them, some of us get so damn beaten down and shell-shocked we can't even summon the courage to ask the high-priced LLMDs we see for things we know perfectly well we need.
Any group that's marginalized like us will have debates about whether the problem is that they're too cranky and strident. I would think we might have learned something from AIDS, though.
It's good to spare yourself from aggravation. I would focus on that, rather than sparing the feelings of those who are too dense to know they're stomping on yours.
I can't afford to STAY angry, with this disease, because my body and nervous system aren't strong enough. That doesn't mean I can't GET angry, I can and do and sometimes that is a very good thing. It's what I do about it that matters.
If someone's really clueless about herxing, I might ask them if they've ever heard of nerve gas. (If the answer is no, walk away). Because nerve toxins are what we're dealing with, when we talk about herxing.
Sometimes it helps to appeal to their vanity. 'Oh, I'm sorry, I don't know why I thought you'd be better informed about this...'
The reality of my illness is not up for a vote. But the treatment of Lyme by our healthcare system IS, in a very real sense, up for a vote, subject to public perceptions, as the Maryland Lyme bill reminds us.
So I try not to get aggravated, because I don't have anything personal at stake in what some drooler thinks. I'm sick as hell and I know it.
But at the same time I try not to let gross ignorance go unanswered, because if I do I am only helping to perpetuate the problem.