Many of us know or have experienced the mundane routine of work life. Sitting for long hours and staring at a screen, filing dense reports, attending meetings, or in the era of Zoom, sitting through a call that seems to have no end in sight. While it may seem like an uncomplicated habit for some, to others, like folks living with a chronic illness or disease, this practice can be an obstacle within itself.
Ediomi Utuk-Lowery is a consultant with American Express, a model and creative, one of the co-founders of the Philadelphia-based sickle cell disease (SCD) non-profit Crescent Foundation and a SCD survivor. For Ediomi, knowing how to navigate her work–life balance isn’t just a small task, it’s a necessary job that keeps her healthy and out of the ER.
SCD is a blood disorder that results in abnormalities affecting the hemoglobin found in red blood cells. The cells form a sickle-like structure, hence the name, and can be the reason for pain crisis and other health complications later in life. Diagnosed with SCD as a child, Ediomi has had years to learn how to coexist with the intermittently debilitating disease. As an adult and evolving entrepreneur whose work is both remote and in-person, Ediomi has tackled the new challenges that come with managing her disease. Including finding a healthy work-life balance.
“I feel so blessed in the fact that I don’t have to explain too much. My boss told me in the beginning, ‘Just text me whenever something happens. You don’t have to worry about showing up; I got you covered.’ Having people like that in your cipher is almost an anomaly. I feel like I’m an anomaly,” she told THE BLOCK.
“Most people out in the workforce who live with sickle cell … nobody cares. Nobody understands it,” Ediomi continued. “So as I move through my day, the interactions that I have aren’t focused on sickle cell at all. That rarely ever comes up, honestly. Unless I don’t feel well,”
“Peace of mind. My whole thing is how can I maintain my own peace of mind in order for me to survive.”
Consulting for American Express, and as the chief marketing officer for Crescent Foundation, Ediomi is constantly juggling responsibilities and roles to keep the ship sailing smoothly, but better than most she understands that rest and realistic expectations are key when it comes to managing work and stress.
Grounding is very important for me. If the pandemic told us anything, it’s you have to be able to control your own happiness and peace of mind and stay grounded in that.
Ediomi Utuk-Lowery
Staying grounded is Ediomi’s practice for maintaining both her mental and physical health in and out of the workplace—and it’s a reminder for all of us. As someone who knows how her disease can trigger a pain crisis, Ediomi is cautious about over-working and mindful of the amount of stress she lets into her life. Taking time to rest is also important to navigating her health. Ediomi opens up about how she has learned to advocate for herself in the work world—an environment that doesn’t always hold space for individuals outside of the palatable norm.
“I’ve taught myself the ways of excellence, in a sense that most people who don’t live with anything that’s challenging them or challenging their life on a daily basis don’t have to have. They don’t have that same grit that I have. I’m setting boundaries and setting commitments to myself to keep. Especially in the corporate world.
“The way that I’ve learned to navigate that, especially now, is to set clear intentions, not only for myself but for my leadership to understand these are my goals.” Ediomi explained.
The Crescent Foundation co-founder describes how for employees with chronic disease or illness, both large and small institutions aren’t always as accommodating to needs within their policies. This can make it difficult or intimidating for people to be upfront about their requirements to comfortably make it through a 9–5. With the risk of termination, silence is often the safest option.
“There’s a huge insensitivity culture [in corporations]. There’s a lack of understanding and empathy, especially in corporate. Corporate wants ‘bottom line’, that’s all they care about. So what does that human experience look like? Being vocal about what you live with, yes, it’s a good thing. I’m not saying that you shouldn’t do it, what I’m saying is, I don’t want you to put me in a box because of what I share with you,” Ediomi said.
Ediomi recognizes the challenges and stigmas folks face due to discriminatory practices that limit open dialogue and communication between worker and employer. She goes on to share that because of these stigmas, she often feels the need to rise above expectations, despite her body’s need for rest, in order to prove that she is just as capable of her co-workers without the disease—something she’d also have to accomplish due to the pigmentation of her skin.
Whereas many would see living as both a Black woman and SCD survivor as a crutch in the workforce, Ediomi sees an opportunity to shatter expectations and to astound.
I think Black women have a very unique opportunity to shake some shit up. This culture wants to keep us quiet, negligent, dependent. … But as a Black woman, especially in 2022, what noise can you make collectively in order to create change, to improve equity?
Ediomi Utuk-Lowery
No stranger to facing adversity, Ediomi takes pride in her willingness to challenge the status quo of the workforce by holding higher corporations accountable for providing equitable workspaces.
“I intend to have equal pay. I intend to have my voice heard. I intend to speak up whenever I feel anti. I intend to hopefully see more people of color in leadership positions like me. And I share that very broadly. These are what I want to see in corporate, what I want to see for myself,” she said.
“Perspective is everything,” Ediomi added. “We have to really rethink all of our policies from the ground up. We have to dismantle a lot of the things that we thought were normal. That’s what building an equitable community actually means.
If You want to commune with individuals who don’t look like you, you need to establish ground principles that work for everybody.
Ediomi Utuk-Lowery
Utilizing her own understanding of intersectionality, Ediomi stands on the side of history that demands leadership reflect diversity. In order to better represent your workers, you must be willing to empathize with the perspective of your workers Ediomi says. As an advocate for herself, she has managed to fight for her visibility as both a Black woman and someone living with a chronic disease. Although there is work to be done, Ediomi is hopeful that she’ll be a leader able to provide a means of job security and equity for those like herself in the workforce whose ingenuity and innovation make them the ideal employee.
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Sandi Webster
Congratulations, Ediomi. You are always magnificent in expressing your thoughts and feelings. You are as beautiful inside as you are outside! Much love.