Why I’ll No Longer Say, “I Have a Disorder”
Dedicated to all neurodivergent tweeple for helping me understand who I am.
It wasn’t until I was 35 that I learned the name of the disorder I am labeled with, and at first, I embraced it. It gave me access to resources, which finally gave me answers. After 20 years of searching, I was in need of an explanation. And I got one. A neurological explanation for why I behave the way I do. For why I am so different. For why everything feels like so much of a struggle. For why my life always feels so hard.
Sensory processing disorder (SPD) was the first term that explained exactly how I am. My senses are always heightened, making lights, sounds, smells and touch become too much to handle. My reactions are primitive, causing me to fight, flee or freeze. My spacial awareness is acute even though objects are actually farther than they appear. My motor skills are off and my movements are clumsy. My processing feels slow not only physically, but mentally. My words are jumbled, delayed. I feel as if I am not in real time. Trying to keep up causes me to feel easily overwhelmed. Overloaded. Causing me to have meltdowns and sometimes to blackout. When things are really bad, I wish to harm myself. And sometimes, I do.
I have suicidal thoughts — I want it all to end. And that's just the beginning.
SPD was the first label that ever resonated with me, and it gave me the ability to begin exploring myself. It gave me a path to follow. It was my yellow-brick road. My way to see what was behind the curtains.
For the first time ever, I was able to read about people like myself. Feel moments of kinship with total strangers. Moments that made me smile. That made me cry. That helped me finally understand the way I think. That ignited a spark in me that lit a new feeling — I saw who I am.
But I still didn’t know that I liked what I saw. I was still struggling, and I was weighed down by having a disorder. By being different. By having something that it seemed people were fighting to find a cure for. To end it.
I even became one of them.
In my writing, I used the phrase, “I have sensory processing disorder.” I fell into the trap hook, line and sinker. I was under layers of muck, and struggling.
Even after coming out to friends and family as having a disorder, I didn’t feel much different.
Sure, it was nice to finally be able to discuss what my perceptions were and why I reacted the way I do. Or to leave the room if I became overwhelmed without others thinking I was being rude. Even though some probably still did. And it became easier to wear my headphones and my sunglasses without having to explain myself.
But I still felt like I had to apologize for my every action. Like I was wrong. Like I needed to change. I still felt locked inside my own head, bursting with realizations I needed to share.
And then came Twitter.
Becoming active on Twitter after almost two years of knowing about SPD educated me on my way of thinking. On being neurodivergent. And changed the way I look at disorder.
What once felt like a lifelong companion, a friend, I am now seeing that disorder is my rival. My antagonist.
It is the word that leads to so much misunderstanding.
The word that stands in the way of people like me being able to truly express who we are. The word that has the power to hurt us like nothing else can. That makes people think we should have limited rights at work, in relationships, in life. That makes people think we should be cured.
It attempts to correct us. To reorder us. To fix us. And in the worst cases, to sterilize us — to limit others from inheriting our way of thinking. It takes away our power. It weakens us. It is our kryptonite.
By becoming active on Twitter, I've gotten to know those most like me — others labeled as having disorders — and I’ve gotten to know them in a way that works best for what appears to be the majority of us: by writing.
When writing, we don’t have to deal with the verbal, interactive, distractive component of communicating.
We get to think. We get to process. We get to focus and to be present.
Because as most of us know, our minds often take us elsewhere.
And when writing, even that is no longer an issue. In fact, it is often an advantage. And we can always come back to what we were thinking.
Online, we can communicate without distraction.
Without lights and sounds and smells. Without things buzzing and moving and trying to get our attention (well, aside from pesky ads). Without the need to worry about how our facial expressions or movements make us come across to others. We can communicate at our own pace without the pressure of needing to adjust. To to conform. To change. To fit in. Because we finally do.
I have found my people — my neurotribe — and the first thing they taught me is that I do not have a disorder, I have a different way of thinking. And that there is nothing wrong with that.