{"id":179,"date":"2013-07-12T09:00:11","date_gmt":"2013-07-12T14:00:11","guid":{"rendered":"http:\/\/disabilityinkidlit.wordpress.com\/?p=179"},"modified":"2020-12-09T22:48:00","modified_gmt":"2020-12-09T22:48:00","slug":"jacqueline-koyanagi-autism-spectrum-disorder-fibromyalgia-and-invisibility","status":"publish","type":"post","link":"https:\/\/disabilityinkidlit.com\/test\/2013\/07\/12\/jacqueline-koyanagi-autism-spectrum-disorder-fibromyalgia-and-invisibility\/","title":{"rendered":"Autism Spectrum Disorder, Fibromyalgia, and Invisibility"},"content":{"rendered":"

I\u2019ll never forget the moment I realized something wasn\u2019t quite right. I sat with one of the few people in my high school I felt safe enough around to call \u201cfriend,\u201d surrounded by the sound and movement and color and sheer overstimulating white noise that was high school. Watching other kids move around so quickly, unplagued by pain and overstimulation and exhaustion and confusion, my long-standing frustration hit the ceiling.<\/p>\n

I took all the words that had been hiding under my tongue and forced them out. I said, \u201cI don\u2019t understand where everyone gets their energy. I look at them and they seem like they\u2019re always awake and alert and none of this noise bothers them. I\u2019m almost always overwhelmed, and I\u2019m always<\/i> tired and in pain.\u201d<\/p>\n

My friend turned to me with a face full of genuine concern and said, \u201cReally?\u201d<\/p>\n

With that one word, that one look, it hit me that my experience really was abnormal.<\/p>\n

Until then, I\u2019d assumed I was lazy. Weak. Oversensitive. By confessing to my friend, I\u2019d been hoping to hear something like, Oh, we all feel like that. High school makes all of us tired. No one likes noise. Socializing is hard for everyone. You just need to try harder<\/i>.<\/p>\n

It would have meant there was an easy answer. It would have meant the problem was me, that my struggling was easily overcome by sheer force of will. It would have meant bootstrapping myself until I was functioning at full capacity, because that\u2019s what we\u2019re meant to do, right?<\/p>\n

In my teenaged eyes, everyone else was running a marathon with ease, looking at me with confusion while I struggled to make one lap around the track. Surely, I just needed to push harder, run longer, build up my endurance. That\u2019s what I\u2019d believed, what I\u2019d been told. That\u2019s the narrative I\u2019d learned from countless stories, lessons, motivational posters.<\/p>\n

Instead, with my friend\u2019s one-word puzzled response, I knew: Something in me was different. Not just lazy or weak, but fundamentally different from the kids around me who had so much energy and easy enthusiasm that they lost me in the fray.<\/p>\n

\"Contributor<\/a>Both physical and mental health care and awareness being what they are, I didn\u2019t find answers until well into my adulthood.  \u201cAsperger\u2019s Syndrome,\u201d they said (though the DSM-V now categorizes this as autism spectrum disorder). \u201cSomatic sensitivity comes with the territory. Of course you can\u2019t figure out how to befriend your peers \u2014 you\u2019re running different brain-software on different brain operating systems. You need a cross-platform piece of communication software that you can share.\u201d<\/p>\n

\u201cFibromyalgia,\u201d they said. \u201cYour muscles and joints are on fire, your body is fatigued, your sleep cycles are shot, because you have this thing for which we have a name. The pain and fatigue aren\u2019t just normal byproducts of living; they\u2019re symptoms of an invisible disability. And we have things that can help alleviate the severity of the symptoms. We can help you structure your life in a way that will let you seize the good days and rest on the bad days, because you will have both, just as you always have, and it\u2019s okay.\u201d<\/p>\n

\u201cYou are okay,\u201d they said.<\/p>\n

\u201cYou are allowed to be in pain,\u201d they said.<\/p>\n

\u201cIt\u2019s not all in your head,\u201d they said.<\/p>\n

Strangely enough, cupping these labels in my hands, I finally felt not-broken. I felt like I was allowed to exist exactly as I was. I felt seen for the first time in many, many years.<\/p>\n

That feeling of not-brokenness comes and goes, but the diagnoses helped tremendously. They were, and are, freeing. They\u2019ve given me permission to be who and what I am. They\u2019ve given me permission to have the brain that I do, the body that I do. That doesn\u2019t mean I don\u2019t strive to overcome the disparity between myself and the expectations of the world around me; for me, it just means that the disparity isn\u2019t the result of my obstinacy or laziness. It\u2019s just a disparity.<\/p>\n

It just exists. I just exist.<\/p>\n

I am disabled. For me, that knowledge is empowering. I wish I could visit my teenaged self and tell her that it isn\u2019t all in her head, that there\u2019s a reason people found her social awkwardness frustrating, there\u2019s a reason loud auditoriums and shouting kids made her want to run away, there\u2019s a reason she has the physical tics she tried so hard to suppress, that there\u2019s a reason she\u2019s in pain and exhausted all the time, that there\u2019s a reason she\u2019s trying not to cry in History class because sitting up nearly made her pass out from the shooting pains in her neck, back, hands, and legs.<\/p>\n

I want to tell her she\u2019s disabled, because it would have changed her life nearly twelve years early. She would have given herself permission to not berate herself when she didn\u2019t understand social cues. She would have given herself permission to stand up for herself when her abusive family member gaslighted her about her then-undiagnosed autism spectrum disorder. She might have even given herself permission to stim when she needed to, instead of feeling shame that the impulses existed at all.<\/p>\n

She would have had opportunities to thrive that were hidden from her out of ignorance.<\/p>\n

This is why we need a culture of awareness. I can\u2019t go back and tell my teenaged self these things, but I can live on her behalf. As a diagnosed adult, I can tell people, \u201cNo, I can\u2019t go out with you \u2014 I need to rest today.\u201d I can tell people that I\u2019m on the spectrum and what that means, so our social expectations are on the same page. I can tell someone when sensory stimuli are too much and I need to leave.<\/p>\n

I can use all of this incredible, wonderful knowledge to cultivate a life full of relationships and work and hobbies that give me room to exist as a disabled person.<\/p>\n

That is empowering. I hope the teenaged me, somewhere deep inside myself, feels cared for and seen in a way she never did in high school. I hope the kids in high school today are being given the chance to thrive I never had. And I hope they have the chance to read stories featuring kids like them, human beings like them, who aren\u2019t conceptualized as broken. I want them to have a different narrative than the one I was given.<\/p>\n

They deserve it.<\/p>\n","protected":false},"excerpt":{"rendered":"

With one word, one look, it hit me that my experience really was abnormal.<\/p>\n","protected":false},"author":30,"featured_media":180,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_generate-full-width-content":"","kt_blocks_editor_width":""},"categories":[57,527],"tags":[58,67],"genre":[],"age_category":[],"disability":[7,76],"_links":{"self":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/179"}],"collection":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/users\/30"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/comments?post=179"}],"version-history":[{"count":2,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/179\/revisions"}],"predecessor-version":[{"id":7089,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/posts\/179\/revisions\/7089"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media\/180"}],"wp:attachment":[{"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/media?parent=179"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/categories?post=179"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/tags?post=179"},{"taxonomy":"genre","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/genre?post=179"},{"taxonomy":"age_category","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/age_category?post=179"},{"taxonomy":"disability","embeddable":true,"href":"https:\/\/disabilityinkidlit.com\/test\/wp-json\/wp\/v2\/disability?post=179"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}