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Aug 07 2015

Invisible does not mean fictional

invisible does not mean fictional

“I don’t believe gluten-free is as necessary as some people claim. Food sensitivities? No, that’s just a picky eater. You’re being played.”
“Chronic Fatigue Syndrome? Oh, that’s just a made up thing. Just get more sleep. I’m tired all the time, too. Quit complaining. You can’t be that tired.”
“Why do you need that? You look fine. You just need to buck up and put on your big girl panties.”
“I think ADHD is over-diagnosed and parents just drug their kids so they don’t have to parent them.”
“Everyone gets a little down in the winter. Seasonal depression? Just get outside more, soak up a little precious sun.”
“What do you have to be depressed about? Count your blessings!”
“What the hell is sensory processing disorder? All that kid needs is a good spanking. Quit wasting your money on occupational therapy. He’s just a spoiled brat.”
“Gifted? Pfft. Gifted is just elite parents trying to make their kids better than all the others. All parents think their kids are gifted. Besides, your kid can’t possibly be gifted, he can’t even <fill in the blank>.”
“She’s fine. Just love her and she’ll be fine.”

Invisible does not mean fictional.

Just because you can’t see it, or you don’t live it, or you don’t understand it, doesn’t mean it doesn’t exist and affect others. I’ve heard all of those comments above, in one form or another, over the last ten years. They have not all been spoken to me directly, but when you read it in blog posts or overhear conversations or see it splashed all over social media…you hear it.

Why do people doubt others’ experiences so strongly? They can’t take our word for it? No one doubts me when I say I have a headache, oftentimes I’m even offered ibuprofen. So why, when it comes up that I have Chronic Fatigue Syndrome and I have to be careful with my energy output, am I doubted and challenged with, “Me too. I’m tired all the time too. I should really get more sleep” or “If you exercised more regularly you’d have more energy.” I get eight or more hours a sleep a night, but if I’ve overdone it with activity and/or stress I can easily hit the wall mid afternoon and there’s no turning back. I’ve crashed more times than I can count in the last decade; it’s not pleasant. I have friends with MS, anaphylactic food allergies, Meniere’s, all manners of auto-immune disorders. I have friends parenting kids with SPD and ADHD and severe depression and all manners of mental illness. These may not be easily seen or understood, but they’re sure as hell not fictional. Being marginalized or ignored or told to “buck up, buttercup” is insulting and not doing anyone any favors.

Invisible does not mean fictional.

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  1. Terri Tyson

    Amen!

  2. Gail Post, Ph.D.

    Such an important point. Invisible chronic illness, misunderstood sensory processing issues and yes, giftedness, all seem to provoke others’ projections, advice, and critiques. So important to learn how to stand up to those who criticize and don’t understand, and most importantly, not take it to heart. Great post.
    Gail Post, Ph.D. recently posted…Tips for parents of gifted children: What most parents wish they had knownMy Profile

  3. Bethany

    As the mom of a child with Dyspraxia, which 90% of people I talk to either have never heard of, or don’t understand, including the so called developmental specialists, i 100000% have been there. I’ve been told by family, and friends that he doesn’t “Seem” like there is anything wrong… or But he’s so well behaved! He’s so smart, or he’s just being a kid, let him just relax…

    I have to often remind people that we have worked VERY hard for many years, in OT, or through being super strict, and on top of everything to maintain that “Normalcy” etc. Ultimately, it’s really no ones business, but it’s hard, all you want is for people to just accept what you say, and to see that we aren’t strict to be mean, and we aren’t making it up to get sympathy or “extra benefits” at school etc. We just want the best for our kid, like everyone else…and just because they don’t understand or “see” his disability doesn’t mean it’s any less of a struggle.

    1. Jen

      I have actually heard of Dyspraxia, and have a friend whose daughter has it. It’s NOT an easy path, not by a long shot. And yeah, no one sees the years of hard work and expense and trouble and fights and struggles….just to appear as (what society deems) normal.

  4. Bethany

    It’s not common for people in the US to have heard of it, and often those who do, just think it’s being uncoordinated. But it affects SO MUCH more under the surface. We are lucky that our son is very high functioning. However, that makes it that much harder for others to be understanding when he DOES have a problem.

    And yeah, the work that goes into “normal” is so much more than the average family. And frankly, we’re working with, ‘every one’s weird” THAT IS normal… and if someone has an issue, you just do you, and they can deal.
    Bethany recently posted…Mr. & Mrs. B tie the knot! | Snohomish County Photographer Bethany McGMy Profile

  5. Kirsten

    An amen from the Mom in the back with Fibromyalgia and two 2e kids. Sometimes I feel like it’s a vocabulary problem. People hear “I’m tired” or “I’m exhausted” and well, what parent isn’t? I want a different word for “I wake up every day and struggle to get out of bed, some day’s I’m non functional, and somedays I just want to weep from exhaustion”.

    My kid is curious and so is yours, but again he’s got 15 follow up questions to every question he asks and regularly exhausts my knowledge on a short car drive back from school. Your kid needs to move around a lot too- but mine is sensory seeking, so he’s not just obnoxious for obnoxious sake, he’s trying to get needs met that I can’t possibly keep up, and that’s why he’s making a new noise after you asked him to stop 5 noises before that.

    Your daughter is shy too, but mine has enough anxiety that even after she warms up she won’t likely make friends without a lot of help.

    It’s like having the words in common obscures more than it explains. So Invisible isn’t fictional, but it sure as hell is isolating.

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