Nothing prepares you for the fight to maintain your life. The moment when your authenticity becomes a mirage and you are grappling with fears of the unknown. You reflect on the elements that once made you whole and perhaps, discard the fragments that are no longer applicable. The world you navigate was never designed for your existence, yet you strive to illuminate it with your presence. You are still here. The parts of your humanity that did not erode with continuous bouts of grief are pillars of strength- constants in your life that provide you inner peace. You learn how to redefine and walk into your purpose. There’s a story to tell and only your voice carries the magnitude of its power.
Here’s my story.
May is Lupus Awareness Month. Lupus is an autoimmune disease that affects over a million Americans and at least 5 million people worldwide. It is known for causing inflammation and life-altering organ damage as one’s immune system continuously attacks itself. Lupus patients relinquish control to a mysterious invader, not knowing when the disease will force a day of rest or weeks of hospitalization. And as evident in many studies of health disparities, women of color are specifically at a higher risk of developing this chronic, invisible illness.
My journey with lupus began during my second year of teaching. I was a kindergarten teacher who was simultaneously in graduate school working towards a degree in school administration. It was flu season and many of my students were ill. My body started to respond to the wave of flu-like symptoms that had struck my classroom. I experienced chills, developed a fever, and felt more fatigued than a typical day of working with five-year old students and their candid truths.
I made an appointment with a doctor when my condition became unbearable, sitting in a waiting room for nearly an hour only to be seen for a few minutes. The doctor was an old, white male, likely on his way to retirement. He asserted that I did not test positive for the flu and a day of self-care would be the best remedy. A week later, I noticed that my elbows, fingers, and knees were visibly swollen. I visited the same doctor to inform him of my worsened symptoms only to be overlooked and instructed to manage my stress more effectively. Although I could barely pick up a hairbrush, my struggle and the emotional burden I carried was dismissed.
Throughout my life, I have operated in many structures where my narrative has been discarded by the hands of white privilege. Structures that allow my pain to prevail while cries for help misfire the sense of urgency for change. As a Black woman, I recognize that systems held hostage to the confines of whiteness will not acknowledge my truth, presence, or magic. Whiteness will convey that policies, environments, and organizational practices are not the concern, but the disruption of the status quo is the problem. I have learned how to compartmentalize my life to survive. Yet, when I confront whiteness, it will inform that I do not know how to compartmentalize enough. Whiteness values complicity and silence, which generates a hard road to navigate when your voice is the only one that carries weight. The steps towards liberation become wearisome when the amplification of your fight doesn’t exist.
Steps… I don’t take steps for granted.
I stopped walking weeks after receiving the doctor’s directive to mitigate stress. Imagine getting out of bed, placing your feet on the floor, and standing only to fall flat on your face. As a single woman who did not live in the same state as my family, I wasn’t sure of my footing- literally. The world I knew as an able-bodied person was completely erased.
A friend took me to see an internal medicine doctor. It was an opportunity to share my story (again) with a new person who might take my truths into consideration. I was encouraged to get bloodwork and met with a white nurse who questioned my symptoms. Without hesitation, she looked at me and coldly said, “You probably have a disease like lupus.” Those words suffocated me during the ride home.
I wish I didn’t have to think about race with every negative encounter, but racism robbed me of that choice. If I were white, would the nurse have exhibited more compassion? Delivered her thoughts in a place of inquiry and not an absolute? Would she have remained silent or provided credible resources for self-research?
Hope is not a strategy in dismantling the strongholds of systemic injustice or the cure to an invisible disease. Yet, we can use hope to help people see light amid dim circumstances. I did not have prior connection with this nurse. We barely spoke nor established any kind of relationship. She did not know my story or how I internalized information. We were merely conducting a blood test to determine causes of inflammation; and somehow, with only my identity to examine, she had already determined my fate. The message, like whiteness, was packaged in a subtle way that cut deep.
Weeks passed, no diagnosis. Eventually, I connected with another specialist for a second opinion and shared my story (again). This specialist was a person of color who did not share my racial identity. He immediately diagnosed me with undifferentiated connective tissue disease. This diagnosis was merely a way to say, “We don’t know what you have, but you definitely have something.” A comprehensive treatment plan was not devised. I developed more joint pain and inflammation in my lungs. It was a never-ending cycle of hospitalizations that forced me to take a short-term medical leave from my greatest love: teaching.
The specialist wanted me to experiment with different medications. Most methods failed and I continued to have inflammation drained from my knees in order to walk. I started to do my own research, sharing articles of studies that related to my health condition and initiating discussions about viable treatment alternatives. The specialist did not care for my articles nor background. And never discussed anything beyond the scope of his own agenda. He saw me as a Black woman and assigned his biases accordingly. Rather than listening to what I needed, he proceeded to respond in the ways he was taught.
Whiteness manifests in all of us differently. In white people, it reveals privilege and a right to comfort. Within people of color, it can lend to dissociation from culture, self-hate, or anti-Blackness. People may be taught not to acknowledge color, yet our presence in whiteness makes that inevitable. The images we process, the humans in our circle, and the messages we internalize shape the connections we make and justify why some identities should not take up space. The work of creating equitable systems is a process of learning and unlearning. We do not lean into the ways we have been taught but interrogate those teachings with a critical lens. This work is collective and cannot be done alone.
Afraid… Alone.
My health was declining. Kidneys were changing, inflammation surrounded my heart and lungs, and breathing became a strenuous task. I slept in a chair for months with fears that if I laid on my back, I wouldn’t wake up. It did not take long to develop shingles due to a weak immune system, which landed me in the office of a dermatologist. He was a middle-aged white man with a big personality. I expected to share my story (again), receive a topical cream, and return home to suffer in silence. No one could relate to this nightmare that morphed into reality.
However, to my surprise, he listened.
After several months of sharing the same story, I finally felt heard. He not only acknowledged my illness, but the system I was functioning in as a young woman of color. I was asked to remain in the office following my appointment. He had to check in with a couple more patients yet wanted me to stay to devise a plan. In my presence, he called the specialist who was responsible for my health and challenged him on some of the implemented practices and treatments. Both physicians were a part of the same health network; however, the dermatologist was not concerned about alliances or dissolving a professional relationship. He was concerned about the oppressive structures in place. The dermatologist did not want any clout or a pat on the back, he simply wanted to be on the right side of humanity. I learned a valuable lesson about co-conspirators that day, and in that small room, my life changed.
My dermatologist called trusted colleagues from various health networks and assembled a team of physicians to support my needs. After months of thorough tests, I was officially diagnosed with lupus in January 2010. With treatment plans that cater to my condition, I have been able to function with ebbs and flow of pain- becoming an administrator, wife, holder of a Ph.D., and importantly, a momma.
Equity work requires a concerted effort. People of color should not be forced to do the heavy lifting of the work within their communities or institutions. We should not have to tell our stories repeatedly (again and again) to make it real to the white gaze. White counterparts need to sound the alarms at the sight of injustice. We need co-conspirators; voices that denounce hateful rhetoric and actively work to de-center whiteness. Collectively, we can create affirming spaces, elevate policy changes, and mobilize to dismantle systemic inequities.
Being a co-conspirator is not a profile status or statement of words; it is a declaration of intentional actions rooted in justice. As a Black woman who lives with an invisible illness, the work of co-conspirators is not about sending thoughts and prayers or telling me to “hang in there” as I struggle to get vital lupus medications during this global pandemic. My story is not purposed to draw sympathy, and frankly, I don’t need it. This is a call to act. It’s about taking concerns for my well-being directly to sources of power and developing a movement to eliminate healthcare disparities as well as the pre-existing condition of marginality.
To white allies with co-conspirator aspirations:
I don’t need your attempts to see me; I need you to evolve from seeing yourself.
Don’t just stand in solidarity with me, fight with me.
Don’t affirm my truth-telling in private, echo it publicly.
Don’t talk about the brokenness of systems, rebuild them.
Don’t brand me as the enlightener, educate yourself.
Don’t tone police my anger, work on your fragility.
Don’t tell me what someone really meant, understand why I found it problematic.
Don’t only acknowledge my work, amplify it and #citeasista.
Don’t make me aware of racist and xenophobic leaders, vote them out.
Don’t accept my absence, ask [people who look like you] why my presence wasn’t a thought.
Don’t show up when hashtags surface on social media, rededicate yourself to Black and Brown lives every damn day.
Many lives depend on a moment when someone decides to risk their comfort, status, or affiliations to advocate for one’s liberation. The time is now, and the real co-conspirators need to stand up.
To women of color, keep fighting to take up space.
To co-conspirators, fight to expand space for IBPOC.
To my sistas living with invisible illnesses, I see you and your existence is power.
There’s work to do… and I am grateful to live and be a part of the fight.
Special thanks to Sara K. Ahmed, Dr. Crystal Thorpe, and Hema Khodai for your encouragement while writing this vulnerable piece. Happy Lupus Awareness Month to all the warriors out there.
[This blog post is part of the #31DaysIBPOC Blog Challenge, a month-long movement to feature the voices of Indigenous and teachers of color as writers and scholars. Please CLICK HERE to read yesterday’s blog post by Ebony Elizabeth Thomas (and be sure to check out the link at the end of each post to catch up on the rest of the blog circle).]
