Navigating Lipedema is one of the most difficult journey’s I’ve taken on in my lifetime. Gross under-diagnosis and fat bias support the institutional barriers to treatment. I’m determined to do the impossible and I refuse to compromise self-love, self-care, and support in exchange for it.

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Sheer Confidence

My Lipedema diagnosis changed the way I cared for myself on the outside and the inside. I don't always have the confidence to advocate for myself, but I've gotten so much better at it.

 

 

A year ago, you couldn’t tell me that I would be sharing images of my exposed arms or legs with the world. My Lipedema diagnosis gives me a purpose along with, a sometimes indignant, confidence to advocate for myself. I was relieved to know that the symptoms I was experiencing were real and could be named. My doctors, family, and friends didn’t believe that some people can’t control their body’s shape and weight.

Image of me, a fat black woman standing in a corn field. I'm wearing a burgandy fedora and sheer black gown by Jibri. I'm in a confident stance with my hands on my hips and facing forward.

I grew angry after my diagnosis. I was being under-cared-for and made mischievous because of my appearance. I’m so happy that I’m learning to use that rage as fuel. I am learning how to be an advocate for people who do not fit inside of society’s norms. “Norms” are meant to marginalize us and I try to divest from them in my language, beliefs, and daily practices. I’ve grown the confidence to move away from people whose beliefs harm me.

I must be ‘that bitch’ if I cause all that internal conversation?

Indecent Exposure

Many people with Lipedema aren’t confident showing their legs. I’m committed to not hiding my body, but I still feel the fear associated with someone seeing my bare legs and arms. A few years ago, I decided to stop wearing shorts over my swimsuits. Pre-COVID, I learned to walk into 24-Hour Fitness without making eye contact with anyone. I wore headphones on the way in and turned them all the way up, so I couldn’t hear anybody if they tried to talk to me. The loud headphones and focused gaze made me feel alone in a crowded gym. Once I made it to my swim lane, it was just me and the water. I’m weightless there. All I can hear are my thoughts and the sounds of the pool underwater. I let the water hug and hold my whole body.

Unveiling Me in Jibri

I giggled out loud when the order was complete. This is my first dress from Jibri. I was going to wear a beautiful sheer gown, with bellowing arms and modern textiles. Other people are going to see the parts of me that I’ve kept mostly hidden, in shame. Folks tend to react unusually to my body. They stare, gawk, show pity, admire, and recoil at my mere presence. I must be ‘that bitch’ if I cause all that internal conversation? It’s time I start dressing like it.

Image of me, a fat black woman standing in a corn field. I'm wearing a burgandy fedora and sheer black gown by Jibri. This is a full length photo and I'm holding the bottom of my dress out at the sides.

Full Transparency

The dress arrived back at the beginning of the quarantine here in the United States. It is so beautiful and well-made. It’s sheer, but I don’t feel like I’m naked in it. It’s even a little warm and has a good weight to it. It isn’t a fragile dress. I’m not delicate with my items and as my photographer and I walked through weeds and sticks, I didn’t puncture or rip it. When my mother was alive, she would show me the seams and insides of her “good suits.” She thought they were well-made and wanted me to be able to recognize that for myself. The Illusion Full Sleeve Maxi Dress reminded me of a well-made dress that my mother would be proud I chose.

Exercising power over anyone’s body without consent is a value that harms Black men, Black women, White women, children, people with disabilities, queer and trans people, and people of color.

The Thinning of the Veil

In a year when there is a blue moon on Halloween during the apocalypse, in the Mercury retrograde, right before the election – I decided to take a drive on up to the last place my mother was living, because I’m a masochist, to shoot the photos for this post. Going back up there brought me back to her last days. Our last conversation was one where she expressed worry about dying and leaving me alone. She was afraid that I wouldn’t be able to take care of myself without her.

 

 

Crystal Clear

In 2006, when I lived in this little rural town, I was trying to be “an independent boss bitch” who wasn’t going to “sleep until I died.” (That sounds horrific as a 39-year-old.) When my mother passed away, my world fell apart. I spiraled into survival-mode. I became pretty good at selling my things to survive the financial disaster of 2006. The part of me that she’d always protected died up there too. Another me was born.

I’ve learned how to build a community with other people who value interdependence. I was forged into someone who was able to learn how to live out my values. Today, I can confidently say that I don’t need any, one person. I need a whole community of people. I know how to ask for help, set and manage my boundaries, and move away from anyone that can’t provide care for me and doesn’t want the care I can offer them.

Sheer Terror

I knew that I wanted to build a Halloween look with the Jibri Illusion Full Sleeved Maxi Dress. I decided to begin the shoot with a day-to-day look. When we changed locations, I added accessories until the look turned dark. I purchased this cute velvet coated skull purse from KillStar. The bag comes in other colors and I’m currently crushing on the green bag. It comes with a longer strap that allows me to wear the bag across my body. Party City had the shoulder feathers and top hat for Halloween, but a quick search on Etsy will get you a whole array of shoulder feathers. I found the neck feathers From Etsy as well. I call the look, “The New Orleanian Day Walker.”

Image of me, a fat black woman standing in front of an old rickety brown door. The background looks spooky. I'm wearing a black top hat with the sheer black gown by Jibri. I have on a spiked black mask that covers my whole face under the tophat. I'm holding red velvet skull purse is resting atop my palm, next to my face and my face is turned away from the camera and facing the purse.

Image of me, a fat black woman standing in front of a old abandoned home with a brown door. I'm wearing a black top hat and the sheer black gown by Jibri. I'm holding a red velvet skull purse, with both hands to my chest. My face is covered by a black spiked mask and I'm wearing black and dark green feathers on my right shoulder.

This is a close up black and white image of me, a fat black woman, wearing a spiked full-face mask and black tophat and sheer, black Jibri gown. I am tipping my top hat and looking at the camera.

 

Seeing Through it All

While the “veil is thin”, I hope my mother sees what I’ve harvested for myself. I can recognize where I am not cared for and move away from there at my ‘big girl age’. I’ve learned to recognize the ways I deny myself care when I impose body norms, ability norms, and wellness norms on myself. I’m questioning what I believe about bodies, autonomy, health, and norms nowadays.

Exercising power over anyone’s body without consent is a value that harms Black men, Black women, White women, children, people with disabilities, queer and trans people, and people of color. Even white men suffer from the ways systemic oppression has limited their access to the advantages found in equitable power systems and diverse societal contributions. Every single person with a body should be concerned with my autonomy. If I am harmed, marginalized, and oppressed, then you are being harmed, marginalized, and oppressed. My healing and liberation is a harvest that the world can thrive on. So is yours.

 

An image of me, wearing a sheer, black, Jibri dress and burgandy fedora. I'm standing in a corn field with both hands holding the brim of the fedora over my eyes.

 

No matter who wins the U.S. Presidential election, take time to consider how you are harmed by the values that undermine body autonomy, despite your race. Use your power to protect values that honor your whole humanity. As long as we uphold harmful values, nobody has personal autonomy, safety, love, and respect. Live the change you demand from the world.

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