As a child, I was constantly told that what I was experiencing wasn’t real, so much so that I questioned my reality. Not knowing I was autistic, my world was so vastly different from most everyone around me. A fact that I now know, that I didn’t as a child, is that pooping can cause a sensory overload. Yes, you heard that right. Pooping can be a painful sensation for those who are autistic. For me, pooping is a painful sensory experience and I end up feeling sick and tired afterward. I tried avoiding pooping at all costs- this left me chronically constipated.
I was told over and over that if I pooped I would feel better- by doctors, parents, family members. Trusted adults in my life and those in authority told me that I was going to feel a way that I didn’t. When I explained that is how I felt, I was told what I was feeling could not possibly be. To be put simply I was gaslit. Gaslighting is a form of physiological abuse that makes someone not trust their own experience and in turn themselves. This is done by denying someone’s experience and invalidating their feelings over and over again. The word originated from a play called “Gas Light” in 1938 where a husband dims the gas lights in the home and convinces the wife nothing has changed.
I was in so much pain. I had an x-ray done eventually that showed poop all up my spine. Yet, I was told that I was too young to have back pain. I was told that I wasn’t helping myself when I refused to go to the bathroom or take the medication that helped me make it easier to go. I started to believe that I was not in pain when I was. That everyone experienced what I did. I believed that I was not tough enough. It wasn’t until my diagnosis at 16 and years of educating myself that I finally learned that what I had been experiencing was real. That it was in fact painful to poop.
I have had to learn to trust my body again. The few times I have been constipated since has blown my mind how much pain I was constantly in as a child. I was going to class, to physical education, to sports, taking tests, all while chronically constipated. I had insane stomach aches. I had chills. My entire body hurt.
My experience was not what those around me had ever experienced and so they told me it wasn’t real. It’s important to remember how powerful words are. That your experience is not everyone’s experience and to really listen.
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Chloe Estelle
Chloe Estelle is the founder of OurTism, a writer, blogger, filmmaker, photographer, and Asperger’s specialist. She runs a weekly live stream called Starlight Talks where she discusses various topics related to autism. She is beginning a mentorship program through OurTism.com. Chloe’s struggles growing up were invisible to those around her. She didn’t understand the structure of school or social interactions. Chloe was placed in slower classes. Assessments did not capture her true intellectual abilities. This pattern continued and worsened until her grades started dropping and she struggled until she was finally diagnosed at age 16. The diagnoses was a relief that there was a reason for so many of life’s struggles. It still took a while to find the right therapies and practices that would allow her to live a healthy life. Taking what she learned, she is now able to share her experience with the world and hopefully end the struggles of those on the spectrum earlier in their life.