For Harlie, difference meant determination. She wasn’t going to let EB define who she was. But learning to do so meant embracing her limitations just as much as knowing when to defy them.
The limitations of determination
When Harlie was younger, all she wanted to do was fit in. To do everything that came so easily to other kids her age. They were able to play tag for hours without their feet hurting. They were physically active and played sports. She realized she just didn’t want to hear other kids talk about it, she wanted to experience the fun they were describing. She wanted to determine how long she could play and what activities she could do. She didn’t want her condition to make those choices for her.
So Harlie exerted her will…her desire over EB and ‘forced herself’, as she says to be active. She was determined not to be defeated by her skin. Unfortunately, every time she did so, she had to deal with the consequences. Or ‘pay for it’ as she says. Since it was painful, uncomfortable and took weeks for the skin on the bottom of her feet to heal.
So she learned, her condition couldn’t be willed away or ignored. There were severe consequences when she chose to ignore it. She had to embrace the fact EB was a part of her.
Changing the narrative
However, Harlie learned she did have the ability to change the narrative and the first place she did that was with her shoes.
EB limited the kinds of shoes Harlie could wear. She had to find ones that wouldn’t cause her feet to blister, unfortunately, these tended to be chunky and unfashionable. For someone who loved to dress up and wear cute outfits, it was always disappointing being unable to complete the outfit with cute shoes. So Harlie determined she wasn’t going to allow EB to dictate what she can and can’t do.
So she changed her narrative and decided to be a tomboy. This way, it was her decision to be wearing boyish shoes and not EB forcing this upon her.
Rebelling against her skin
She also took this determination one step further by getting a tattoo as an act of rebellion against her skin.
No one knew how her skin would react to a tattoo. But she wasn’t going to let that stop her. She was determined to find out.
Harlie found a tattoo artist who was willing to work with her condition. The artist used a light touch, wet cloth instead of paper towels to wipe, and went slowly. If it didn’t work both the tattoo artist and Harlie were okay with stopping.
Contrary to everyone’s expectations, her skin didn’t react to the small test tattoo. Instead, it healed faster and was more vibrant than the norm.
Finding the balance
So for Harlie, having an invisible or non-apparent disability meant learning how to live with EB but not being defined by it. To know and accept the times when she has to yield to the limitations of her disability and at the same time not be defeated by it.
Sometimes this is as simple as changing her narrative. Other times, it means taking a chance and doing something new and being willing to accept the consequences of that choice. It’s a delicate balance and one she continues to learn.
In the next post, she will share some of the struggles of having a non-apparent disability.