“Breast cancer taught me that no disease exists in a vacuum”
BY SHAVONNE JAQUESS-SMITH, IMAGE PROVIDED
It has been 11 years since my diagnosis. 11 short years since being told I have breast cancer and my life changing forever from that moment on. I joined an elite group of some of the most brave, tenacious, and determined people: breast cancer survivors. And the support the world has shown us, not just for Breast Cancer Awareness Month, but on a daily basis, makes my heart swells with a sense of belonging. I am filled with pride when seeing the way communities across the country come together to honour those who have battled breast cancer or know someone whether it’s a friend, co-worker or family member. With the onslaught of pink ribbons, fundraisers, and support, the way I have seen the world come together year-round, to not only fight this disease, but support the warriors who have fought it, fills me with pride as a survivor.
Breast cancer has, undoubtedly, one of the most well-known disease awareness campaigns not only in our nation, but around the world. And incredibly effective. Since Breast Cancer Awareness initiatives began in 1985, over 517,000 lives have been saved from better treatment and proactive screening, according to the American Cancer Society. And a lot of this success could probably be due to the fact that, more than likely, we all know somebody who has battled breast cancer, especially as one in eight women will be diagnosed with invasive breast cancer in their lifetime.
And for over a decade, the anniversary of my diagnosis was a time of reflection and educating others on this disease. But this year, it is now a time to expand my understanding of wellness for all, and how I can use my platform as a survivor to reduce the shame and stigma surrounding all diseases.
Growing up in St. Louis, Missouri as a young Black girl, I experienced chronic pain. For anyone who has experienced the hardship of illness at a young age, you can understand just how isolating it can be. I had to advocate for myself and convince medical professionals that what I was experiencing was not only real, it was excruciating. It was hard to relate to anybody, especially my classmates or children my own age, because of my fear of their pity.
From early on, I was misdiagnosed with sickle cell. I knew that navigating the healthcare system, especially as a woman of colour, could be a confusing and lonely path, but I never expected misdiagnosis to also be something to be on alert for. It wasn’t until years later I was accurately diagnosed with Lupus, and after that it felt like an avalanche of medical mishaps and extenuating situations that marked my early years and made me retreat further into myself.
And outside my own experience, I saw the women who surrounded me battle their pain in solitude as well. From diabetes, to dialysis, to cancer, I witnessed the women I love suffer in silence.
At 30, I faced ovarian cancer. It was an incredibly lonely experience where I retreated into the deepest parts of myself. This was a way to try to protect my family, shielding them from my pain, and protect myself from their sympathies. At 40, breast cancer entered my life and I was falling into the same patterns of isolation. The only moments I would allow for help of any sort came from my beautiful, kind son, who would drive me to my chemotherapy appointments. These were glimpses of vulnerability that I would share with only one other person on this planet. I was grateful for him, for allowing me to be raw and human on those drives to and from my appointments. In those moments, I felt cared for and loved. I was truly unjudged.
When I rang the remission bell on 16 April 2013, I was profoundly changed. I had learned just how crucial it is to lean on others, to open yourself up to any sort of community, and to allow yourself to be seen at every point in your medical journey. Cancer, like any disease, is a battle, and no battle can be fought alone.
It wasn’t until many years later after my cancer was in remission that our culture has become more accepting of those with autoimmune diseases, chronic pain, disabilities, and more. There are online communities, social media vlogs, meetups, awareness months, and so much more to help take away the isolation from your diagnosis. As a society, I am happy to find there is now a shift to finding solace, connection and community in your health navigation, but for so many seeking welcoming in their wellness journey, they remain stigmatized and shunned. I saw just how impactful this can be for my own son.
Seven years after my breast cancer journey, my son was diagnosed with HIV. Shortly after his diagnosis, on New Year’s Eve in 2020, his life was taken from us too soon. I never had the opportunity to return the favour of caring for him during his diagnosis the way he cared for me during mine. I think of those days and wonder what kind of isolation and fear he must have initially felt. I think of my own feelings of fear and uncertainty. There was so little I knew about the disease and I felt powerless. I wished for him to have the same support it took me years to embrace, the ribbons, the fundraisers, the mass acceptance and support from everyone, free of judgment.
And so his death shifted my life’s purpose yet again, just as his life had saved my own. It guided me on a path to being an “auntie,” a “mother,” and a friend to others in the LGBTQIA+ community seeking acceptance, love, and connection even in the most isolating of times.
Breast cancer taught me that no disease exists in a vacuum. Lupus, cancer, HIV, diabetes, they are different diagnoses, but they share the same lesson: the need for support. And far too often, communities of colour face barriers to quality care: misdiagnoses, lack of insurance, and fear of stigma. I experienced all of this firsthand. And I have learned that we need to be outspoken about our journeys so that nobody facing these illnesses must go at it alone, especially when it comes to HIV.
HIV impacts Black Americans at a disproportionate rate, with the rate of new HIV diagnoses per 100,000 among Black adults/adolescents was about eight times that of white people. Black females were diagnosed with HIV at 3.84 times the rate of all US females in 2023. It is extremely important to note the impacts on queer community, with gay and bisexual men most affected by HIV. Yet despite an approximate 1.2 million people living with HIV in the US, the State of HIV Stigma study by GLAAD and the Gilead COMPASS initiative shows a majority of Americans believe stigma around HIV still exists, with nearly 90% agreeing.
And it has been especially concerning to me this year that stigma will continue to rise with financial support rapidly retreating. Campaigns to raise public awareness, educate populations on resources, and funding to eliminate stigma has shockingly decreased because of political campaigns and pressure to eliminate HIV/AIDS services, as well as services meant to support historically marginalized populations, like the LGBTQIA+ community, Black community, and women. Since January 2025, the new US administration has effectively dismantled crucial, life-saving government agencies that fund healthcare and they have repealed policies supporting LGBTQIA+ health equity.
I do not let these attacks keep me down. Just as I have fought for my own life, I will continue using what strength I have to fight for others, especially those in the LGBTQIA+ community in honour of my son’s life. From this experience, I was called to work with The Normal Anomaly initiative, an organisation dedicated to eliminating stigma and empowering people living with HIV. I connected people with resources, insurance options, travel for appointments, and most importantly, community. I helped them find the language I once didn’t have when I sat in a clinic, terrified and alone. I have led the PrEPHer initiative, dedicated to providing pathways for women’s autonomy to navigate their own wellness journeys through proper resources on HIV prevention, through destigmatisation of sexually transmitted diseases, and through a sense of belonging to something bigger than just themselves. It is especially close to my heart and important as many of the women I have served are Black and Brown, queer, lesbian, or trans, and they have their own stories or family history of illness and are seeking to break the cycle of stoicism and to open themselves up to receiving support.
If there’s one thing I’ve learned in my many years of living and many years of battling breast cancer, ovarian cancer, an autoimmune disease, and the loss of a loved one, it’s this: no illness should carry shame. They are all part of the human condition. What makes them survivable is not just treatments alone, but love, acceptance, community, and solidarity. I continue to carry this message to my support groups for breast cancer survivors in hopes they find ways to connect and support others, and I carry this message to those I serve through my work, in hopes they know that in times of hardship, they deserve love and acceptance.
So to everyone out there, whether a survivor yourself or a loved one of somebody who has battled for their health, let’s remember that stigma kills as surely as disease, and that community can be one of the strongest medicines we have. My son’s support in times when I needed it most reminds me daily that my story is not about cancer alone. It is about connection. I will honour him every day by continuing to speak up for those still suffering in silence and by being an advocate for the LGBTQIA+ community, until no one has to navigate their wellness journey alone and we all receive the community we deserve.
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