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vitiligo

I have felt bad about how my breasts look. Not because I think they’re too big or too small. They aren’t saggy. They aren’t lopsided. Still, the current standards of beauty scream that my breasts are not right. To fully explain this, I need to go all the way back to elementary school.

I knew when I had mono in sixth grade that something was wrong. Shortly after recovering, I was diagnosed with the autoimmune disorder Vitiligo which causes skin discoloration, often small white patches. While it’s mostly associated with its visual characteristics, like other autoimmune disorders, Vitiligo causes health issues. I have always gotten sick frequently, fortunately, not with anything life-threatening, but I seem to catch any cold or flu going around. I had mono again when I was seventeen. I also have had painful canker sores in my mouth, from the time I was a teenager, which is part of my autoimmune disorder attacking my skin. For a few weeks in grad school, I had Bell’s Palsy, which doctors told me was also related to my autoimmune issues.

I am lucky that my patches of Vitiligo are not very large or noticeable—at least not yet. Vitiligo skin changes over time which is part of what makes it such a mysterious and isolating disorder. Some people have said that Michael Jackson started wearing one glove to cover his Vitiligo. I don’t know if this is true or not, but Jackson’s Vitiligo surely contributed to his feelings of isolation.

billiejean gloves

While I mostly feel indifferent about my Vitiligo (I have a small spot on one of my inner ankles that I couldn’t care less about), I have struggled emotionally with the discoloration of my areolas. The skin on my areolas has some variation. Some of the skin is a light pinkish brown you would expect, but some of the skin is a lighter color.

After a painful break-up of a long term relationship, some short relationships that didn’t go anywhere (partly because I was still getting over the bad relationship), and six months of horrible first dates, I somehow became convinced that my breasts had something to do with me being single.

I didn’t have any legitimate reason to feel bad about myself. I was teaching at a college after earning an MFA. My first book had been published and my second book would soon be accepted for publication. Before I went to grad school, I was a professional modern dancer for many years, and I had done some modeling and acting in my early and mid-twenties. I have wonderful relationships with my family and friends. I have always tried to be a kind person.

Still, I went in search of a solution for my “problem.” Other things contributed to feeling this way. My brief bout with Bell's Palsy, even though I had recovered, had left me feeling as if my looks and health were deteriorating. Even though my face and expressions looked the same as they always had after recovering, I worried it would come back. In my mind, this made my breasts even more of a hindrance. My whole life, people had told me I was pretty, and I stupidly let it become part of my identity, as if being pretty is a personality trait. I knew I had other things, more important things, going for me, yet I still felt my life was out of control.

At a clinic in a city thirty minutes away, I found someone who did areola tattooing. Areola tattoos are usually done for women having reconstructive surgery after breast cancer. I made an appointment. I had worked hard to be an individual since I was a kid, why was I trying to conform now?

The esthetician explained that the process of numbing my breasts would be extremely painful for me because I had full sensation in my breasts, unlike women after reconstructive surgery. A nurse stuck a needle in each areola about half a dozen times, moving around the nipple in a circle. I had braced myself for the stab of the needle, what I was not prepared for was the pain of the injection in my body. The substance made me feel as if my breasts were being burned from the inside out.

The esthetician did the tattooing and told me I could come in for a free “touch-up” a few months later. I never went back. The constant pain that followed the procedure for a week and the sporadic pain I experienced for months after shocked me out of my self-critical haze. I hadn’t met the right guy yet and I was taking it out on myself. Society’s pressure to look perfect as a woman had gotten to me.

The irony is, the procedure didn’t change the way I look very much. I’m not sure why I thought it would even work. I had tried putting self-tanner on my areolas to even out the color when I was younger and it would never take. There’s a part of me that likes that it didn’t work very well. I’m still me and that’s a good thing. But it was a painful (and expensive) lesson to learn.

Vitiligo is hard to deal with because it’s so rare. While there is plenty of commiserating over something like cellulite, skin discoloration can make you feel you’re alone. If you do suffer from Vitiligo, you can take comfort from the fact that the insanely sexy Jon Hamm also suffers from it. Thinking about Jon Hamm always makes me feel better.

Jon Hamm

Everyone feels self-conscious. Even classic beauty Natalie Wood was convinced her wrist was deformed looking after an injury and would always wear large bracelets to cover what she thought of as a hideous looking wrist.

It’s hard for me to write about this. My parents advised me after I was diagnosed not to talk about having an autoimmune disorder. I know they were coming from a good place. They have always wanted to protect me. But not talking about it is not the answer. I’m a writer. I’m a feminist. It’s my responsibility to share this story. I signed myself up for physical pain, worrying about my physical appearance, when I should have been focused on my health. I’m still single, but that’s not what the problem is. It’s body image. I realized I took my first step toward feeling better about my body when I broke up with my verbally abusive ex-boyfriend.

I'm so over the expectation that we're all supposed to look the same way naked. I’m not the only one. Actress Gaby Hoffmann has expressed frustration about Lena Dunham being called “brave” for appearing naked on Girls. “When I hear people say that about Lena I cringe, because I find it predicated on the notion that she somehow wouldn’t feel comfortable with her body. That the bravery is coming from a place that she’s doing it in spite of something,” Hoffman said in 2015.

I’ve spent enough time fretting about my areolas. It's something I still struggle with sometimes, but I’m trying to have more confidence. Being able to write about Vitiligo proves that I’ve become stronger. Maybe someday I'll do a topless photo shoot. Emotionally, I'm not there yet, but don't count me out.

Meg Johnson is the author of Inapprioriate Sleepover  (The National Poetry Review Press, 2014). Her second book, The Crimes of Clara Turlington, won the 2015 Vignette Collection Award and was recently published by Vine Leaves Press. Her writing has appeared or is forthcoming in Hobart, Ms. Magazine, Nashville Review, Painted Bride Quartlery, Verse Daily and others. Visit her online at: www.megjohnson.org and @MissMegJohnson.

Top image via @vitiligobeauties

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