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.
Wait, WHAT?
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.
Don't let a few bad apples ruin it for you! Keep it up, you are awesome 🙂
Aww Jilly Bean, shanks! Miss you bunches and bunches 🙂
I've angered adults for my comments that I feel, based on MY own experiences, that it's a bit easier to accept a chronic illness when dx'd as a kid. I say that because childhood is filled with change, challenges, & just growth, Given a chronic illness young enough (I was dx'd at 7) you grow up with it & it's a normal part of your life, insofar as chronic illness can be normal. It becomes something you accept as part of you. Diagnosed as an adult (I was 25 when the other issues were dx'd although many had been present right along with JRA the whole time) with fibro, it was A LOT harder for me to deal with. It was adding pain to pain. I was used to a set level of pain, challenges etc. & that added to it & took things to a whole 'nother level. So I honestly do feel that while for the parent of a child with a chronic illness it's a tough thing to watch, it is somewhat easier for the child. & because I've said that I've been accused of wishing JRA on kids, hating kids, & a few other things. Come on. I'm a mother. I have a child who complains of pain. I don't & would never wish a chronic illness on a kid. I know how hard it is as a kid to have a chronic illness, it isn't easy by far. Kids who deal with chronic illness have a lot on them. They grow up too fast. They also grow into amazingly strong adults
Acceptance of a chronic illness is not easy at any age. For someone to tell a child that they can't understand what others are going through because they were diagnosed young is so ludicrously idiotic that I am baffled. What an idiotic jerk it took to say that. I am glad I wasn't there to see it! They don't obviously know that kids who are different in are picked on in school not only by other kids but by adults as well, They're treated like liars by school staff when they try to explain why they can't do something or that they are hurting. They don't see the fight that kids & their parents have to go through even to get a diagnosis. I put up with kids tripping me so they could laugh at me when I got up off the floor. When I couldn't take part in gym class, I got to do the JV boys basketball team's laundry of towels & uniforms, something I later found out was not legal!
I was told how lucky I was to be able to come to class late or leave early or have an elevator key. I seldom took advantage of the things in my IEP, because they made me different enough that it was easier not to because of all the comments. I took advantage of the elevator key & being late to class more than anything. Then there's all the times I left school early because I was "sick", more like I just had NO energy to deal with everything. But that's also related to my JRA. I spent so much energy fighting the pain that I had no extra energy to be at school. I was luckier than most in school too.
Any kid fighting a form of arthritis has it pretty hard irregardless of my opinion of when it's easier to be dx'd. Day-to-day, it's no different for kids to fight autoimmune arthritis than it is for adult. Pain is pain, no matter who has it. Two people could feel the exact same thing, in the exact way at the exact level & each one would describe, feel & react to it differently. No one has a right to tell another that their pain isn't enough to make them count. There are NO winners when it comes to comparing pain. These kids with chronic illnesses, especially pain causing ones are heroes to me. I've been there and know what they're dealing with.
Exactly. I never had accommodations in middle school and high school, save the PE thing and most of the time I'd write the notes excusing myself under the name of a family member. Even then, I often was belittled by my peers and looked at by teachers as a lazy heavier set girl who didn't want to run because of the laziness. Even in college, I hardly told professors about my condition until my senior year when my JRA really started to act up again. As a graduate student, I got disability services involved. But I HATE being different, and hate using those.
I agree, kids get used to it. If I could have been the super active girl and on sports teams, I would have loved that. But watching an ex of the bf go through losing much of her active lifestyle because of a recent diagnosis of RA. While I hate never having been so lucky to experience a life without pain, I hate seeing her lose her hold on things. These kids, though, are amazing. I've always had people in my life tell me that they don't know how I'm able to do what I do through my pain – and watching these kids, I am starting to experience those same feelings for them.