Sustaining Wellbeing as a Black Womxn with a Chronic Invisible Disease
Issue No. 5: Stressed Out!
Words - Denise Shanté Brown
I am not my highs or my lows.
I was diagnosed with type one diabetes seven years ago and seven years later, I’m still silently repeating this mantra before checking my blood glucose levels in the morning. No moment is the same but each one requires the work of finding self-acceptance and inner peace beyond the numbers. It’s an invisible disease that my Black, differently-abled body has to carry and I constantly feel the palpable reality of building ways to sustain my wellbeing every day.
What the endocrinologist didn’t tell me is that the stress of day-to-day management, on top of living within the intersections and complexities of Black womxnhood, uniquely manifests in ways that make it harder to be well. The physicians didn’t share that the diagnosis was adding a triple jeopardy to my identity and I would need to expend three times the amount of energy protecting, appreciating, and nurturing my body. I didn’t know that the invisibility placed upon Black womxn in our society and healthcare system would play a role in how little I talked about my disease, low-key hiding its existence to myself and others, for fear that it, too, would go unseen and unheard.
At 30 years old, no longer wanting to hide its existence, I spend more time looking in the mirror gently touching my abdomen, reshaped by a continuous glucose monitoring system reminding me that my lifespan as a womxn with this condition will probably be cut by 13 years.
I have not been able to find a single diabetic study that reveals the number of years lost for Black womxn.
So between monitoring carb-calculated meals and insulin injections, I find the energy to daydream about time. Sometimes I imagine myself being granted a wish to live without type one diabetes for an entire week. I imagine what it would feel like to move through both inner and outer worlds as someone no longer dependent upon expensive, life-saving medication and medical supplies to nourish my body with food and drink. I think about what my body would do with unicorn glucose levels and the kind of relationship we would have absent of resentment. Mostly, I dream about the possibility of living with less stress and more ease, and that dream feels accessible to me.
Within the reality of what it means to manage diabetes and all of the interconnected factors that impact my ability to care for myself, I want to spend the rest of my days embracing what isn’t so easy to live with. My desire to do so hasn’t led me to the perfect remedies or solutions, but over the years with more acceptance, I’m beginning to uncover meaningful ways to sustain wellbeing in my daily life.
To support that uncovering, I’ve been asking a question as a collective call for care to other Black womxn living with unique forms of invisible conditions that go unseen and unheard:
How might we embrace a more loving, embodied relationship with an invisible disease wanting to be fully seen and cared for?
I’ve found that while I may need to rely on medicine to keep me alive every single day, I also need to co-create supportive processes that acknowledge the triple jeopardy of being a Black, differently-abled womxn. My response, with the hopes that others will respond, has evolved into a few life-sustaining practices and tools that have helped me soothe the stress of living with a chronic invisible disease over the years:
Being compassionate and patient with myself instead of living out the harmful expectation of being strong and resilient all the time.
Trusting myself to take care of myself and asking for help when I need it.
Allowing myself to be spacious when I feel driven by a sense of urgency and loss of time.
Protecting my valuable energy, especially when navigating race and gender dynamics.
Finding joy in discovering new recipes that nourish my body.
Advocating for my accessibility needs in public spaces without shame or concerns about being perceived as the ‘angry, difficult black womxn’.
Connecting to myself and my body through pleasure and play.
Sharing the existence of my disease with others and letting the real experience of it be both seen and heard.
Seeking healthcare professionals with anti-oppressive practices who recognize my humanity and listen to my needs.
Designing a sacred space for myself that can be used for rest as resistance.
Writing my own mantras that will keep me calm during moments of anxiety and judgment.
Remembering that while I am living with this disease, I am more than this disease.
Coming to a place of self-acceptance and inner peace with my relationship to type one diabetes has not been easy, and honestly, there are days when it feels like too much to bear. I’m continuing to learn what it truly means to accept and be in this differently-abled body that I’ve been given. I am loving the Black, imperfect form that I see reflected at me in the mirror. I am whole, I am held, and most importantly, I am visible. Each moment of management that I endure every day has shaped my capacity for empathy, compassion and understanding in ways I would not have reached had I not been given this condition to know and see more intimately. These experiences have illuminated the power of healing through imagination, refueling my strength to make wellbeing a real, life-sustaining possibility. 30 years living, and 7 years of honoring where I am in each moment—glucose levels and all—I am still here.
When I show up in the world, I want other Black womxn navigating this invisible disease to know this: I see you, I hear you and we are not our highs or our lows.
