*This is part five of Harlie’s story. The rest of her story can be found here:
part one, part two, part three, and part four.
As mentioned in the previous post, Harlie not only dealt with frustration but also shame.
It was first seen in her great-grandparents. Their son (Harlie’s grandfather) was the first person to have EB. But they never talked about or discussed the skin condition their son had. They didn’t even know it was EB. So Harlie’s grandfather grew up learning to hide his skin condition.
Harlie says he viewed EB as something he needed to bear. He didn’t complain about it, neither did he bring it up, he just dealt with it. But one fact remains, Harlie wasn’t going to find any emotional support from her grandparents, Although, they did recommend strategies that worked for them, like the types of shoes to wear, etc. Otherwise, EB was hidden behind a thick wall of silence.
Shame
Brene Brown in her book Daring Greatly says “[s]hame is the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging.”
She says we all desire to connect with other people and shame arises when we can’t form that connection.
We can experience shame from a variety of different sources. One of those is our inner critic. Or the negative voice in our head that constantly tells us we aren’t good enough… worthy enough… not as talented…or our opinions don’t matter…etc.
Harlie’s inner critic
For Harlie, EB was the microphone the inner critic used to magnify all her insecurities.
It told her she was lazy and inadequate when she could not do something physically that she was quite capable of doing had she not been dealing with EB.
Sometimes her inner critic would tell her it’s best just to stay in bed. Why get up and make her symptoms worse?
It reminded her how hard her mom worked and told her all the hardships her parents had to go through were her fault. If she didn’t have EB, their lives would’ve been easier.
It told her she wasn’t feminine enough because she couldn’t fulfill gender roles, like being a mother or a wife.
Unfortunately, it wasn’t just her inner critic that shamed her, she had other people do that as well.
Being shamed by other people
She’s had people shame her because as a perfectly healthy-looking young person, she shouldn’t be limping. Neither should she be riding a motorized electric cart at the store. She also shouldn’t be parking in the handicapped parking spot.
Shame wasn’t limited to the verbal disbelief uttered by other people. It was also seen in non-verbal ways, like the critical glances, the disgust, and the subtle shaking of the head.
Harlie saw it all and it affected her. To such an extent that she decided if people were going to be staring at her, she might as well give them something to stare at.
So she decided to color her hair. This way the disapproval would be about what shade she chose to dye her hair. Rather than a condition she was born with and can’t do anything about.
Shame’s effect on relationships
Shame also affected her relationships. When she was younger, it prevented her from openly talking about her disability. It told her other people wouldn’t understand. They may not even want to be her friend if they knew. As she’s gotten older she’s realized this isn’t true and has been more open.
But shame wasn’t limited to her corporeal friendships, it also affected her relationship with God. In the next post, Harlie will talk about some of the spiritual frustration and shame she had to work through.