I tried to come up with a snazzy title for this post, something about pain being the same and not making petty comments to other ill people. But I just couldn’t find the right one.
Lately, several groups that I’m a part of have begun to experience a rash of attacks on others from members of these groups. To be honest, it’s gotten me to a point of frustration where I was about to delete my blog, unjoin these groups, and quit volunteering for the organizations I work with.
I’m not kidding.
In the past week, I’ve had some people comment that others with RA shouldn’t have children because of how much of a burden we already are on our families and how in the world were we going to take care of kids? You might remember my super angry rant at the horrible insensitivity here.
Well, the latest thing in another group is that the community is super negative. The person making the comment was diagnosed at 13ish. I disagreed with her post initially, because everyone needs a place to vent and ask honest questions. That’s what that group is supposed to be, and what it is for me. And then…
This is my favorite part…
People began to berate her and say that she must not know what real pain was. Whatever, people hating more, but I let it go.
Until someone said she couldn’t possibly understand what everyone else is going through because she got diagnosed so young so she just need to shut her face.
Why the fuck does it matter when you’re diagnosed? You’re still dealing with horrible pain, with horrible drugs, and with terrible self-esteem problems.
If you have read my blog for a while, you might be thinking I’m a hypocrite.
In the past, I have said that, yes, I feel lucky for having been sick since such a young age (HA!). Sometimes it’s true that I don’t know what I’m missing, and I do feel lucky for that. I also believe that I’ve gotten ‘used’ – as much as anyone can – to a certain level of pain being the norm. That shouldn’t be reality, but it is for me.
By no means, though, does that mean that my suffering is any less real, any less painful in truth.
Who gets to decide whose live is worthy of ruining with pain the whole way through, or who to rob everything from by striking them with disease?
Certainly, I’m glad, no one in that damn group.
It just made me so mad. I wanted to hang up everything and give up. If the rest of the community can’t even accept the pains and horrors of being an ill child with these kinds of diseases, then how am I supposed to get the rest of the damn selfish world to listen?? It’s impossible.
And then something wonderful happened.
I got a message back from a parent of a young boy with Still’s. We’ve been talking back and forth for a few weeks, and her son is having a real rough go of things. He is so sick, and other people don’t understand him 🙁
And then I learned about another friend’s daughter and her recent health issues. She’s got an infection or something, they’re not sure, that antibiotics haven’t been touching. She can’t take her JRA meds right until this goes away. Not to mention, she feels so horrible 🙁
Just because some people who should understand what it’s like, who should be mortified that children are this sick, don’t get it doesn’t mean that others won’t. These kids make me want to fight when I’d rather give up. They’re truly amazing, and I feel so touched that they are a part of my life.
So I’d like to dedicate this post to Jordan and Zack, for fighting so hard in the face of adversity. You guys are heroes to me, without even knowing it. And you do it just by being you. You guys get gold stars in my book, pretty much for forever.