Tested by disorder, teen overcomes through art

Elise Robinson remembers always suffering from tactile defensiveness

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By Nona Tepper

Growing up, Elise Robinson was confined to fleeces and slouchy clothes since she suffered from tactile defensiveness, a rare disorder that causes victims to suffer hyper-sensitivity to touch. 

She would cut holes in her armpits because the seams of her tops felt like micro razors sawing into her skin. She would remove tags and labels. 

But now, 17 years later, Robinson believes she has overcome the disorder, which caused her so much physical and emotional pain during her childhood in Oak Park. She credits the support of her family, friends and love of art for helping her overcome tactile defensiveness. 

"It felt like a bunch of tiny little razors going into my skin, or sometimes the pain would just sit there and felt like something I needed to attend to, like a biting or scratching," Robinson said. 

Robinson realized something was unusual about her relationship with fabric when she was 4 years old, although her mother, Jackie, said she always had trouble with seatbelts as an infant. 

She couldn't articulate that something was wrong to her mother, but her parents recognized her sensitivity was out of the ordinary. After multiple visits to the pediatrician, and hours spent researching online, the Robinsons finally found Kids Unlimited in Oak Park, a physical therapist that specializes in diagnosing and treating such disorders. 

Robinson started making weekly visits to the physical therapists office, and was advised to rub a brush with soft bristles 10 times against her skin before dressing and being forced to spend time in a jungle gym that had multiple types of fabrics inside. 

Those practices helped momentarily, but by the time Robinson finished her hour-long visits and got back in the family's car, she immediately felt like she couldn't wear her clothes anymore. 

Fed up, she decided to limit her wardrobe to the few items that she could tolerate, wearing them over and over again.    

"I was tired of crying every morning about not being able to wear things," she said. 

But getting dressed in the morning was still a struggle. She would spend at least 40 minutes every morning trying to find something comfortable to wear, often wearing the same thing she had worn the day before, and arriving late to school, accumulating absences and tardies. 

Administrators asked her what was wrong, but Robinson didn't feel like explaining herself, feeling like she had no proof to justify her disorder.  

"I remember my mom trying to convince me to wear normal clothes, because she was afraid people were going to bully me at school," Robinson said. "I told her people were already bullying me."

Robinson made her core group of friends at Horace Mann Elementary School, bonding over movies and the SpongeBob Squarepants TV show. But by the she got to Percy Julian Middle School, she was pressed with meeting new students who didn't know about tactile defensiveness. 

Classmates would come up to her and repeatedly tell her that her shirt was inside out, ask why she wore the same thing every day and wonder why her clothes had holes in them. 

At first, Robinson took the time to explain her condition to her classmates. But eventually she got frustrated. She stopped explaining and tried to laugh off her disorder by pretending she had accidently put her clothes on inside out. Then, she would wait in the school bathroom until bullies passed. 

She learned to keep her head down and blend in the crowd, taking out her frustration in her artwork at home. 

By the time she got into seventh grade, Robinson felt fed up with being constantly approached about her clothes and whispered about. She started answering matter-of-factly when classmates asked her about her pockmarked, inside-out clothes, leaving bullies with no recourse but to shrug their shoulders and walk away. She also made it a point to tune people out as she walked by them. 

"My friends at the time helped a lot because they saw beyond what I put on on the outside," Robinson said. "I was just like, 'If they can see the real me, then I'm normal.'" 

Robinson went on to study at the Chicago Academy for the Arts, a safe haven where no one cared about her clothes since all were united by a common love of expression. She flourished at the school, learning to ease her harsh, angry brush strokes with more fluid lines. 

The newfound acceptance made her feel like she could tackle tactile defensiveness again. The summer after her freshman year, Robinson used a mind over matter approach to overcome the disorder, reminding herself that she was stronger than the clothes. 

"I knew that if I really put my heart and mind to it that I could wear anything I wanted to wear, and that my body would just sort of adapt to it and listen," Robinson said. 

She started with jeans, and bought a soft pair to practice wearing for hours at a time. After three weeks, she forgot she was wearing them. 

By her sophomore year, she had refined her sense style to include jeans, T-shirts and dresses. Lace still irritates her skin, and hard denim still bothers the back of her knees. She still wears her socks inside out because the seam bothers her. But, she believes she has overcome her disorder, so making amends with the condition that she's been able to start expressing it in her art. 

"I never branched into using it in my art mainly because it was a dark memory in my past," Robinson said. "But now that I have the skills to convey my ideas and not be angry with my piece while make it." 

Attend a free exhibit of Robinson's work at 5 p.m. on March 23 at the Chicago Academy for the Arts, 1010 W. Chicago Ave. in Chicago

CONTACT: ntepper@wjinc.com

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Maura O'Hara  

Posted: March 20th, 2018 3:54 PM

Thank you for sharing your story, Elise. I'm sure that there are other people suffering from the same affliction and the successes of your journey will encourage.

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