The Role of AI in Empowering QBIPOC in Healthcare
To say that I am pissed, or feel powerless is an understatement.
Also, I will always be an advocate of AI, I believe that it has the best interest of humanity as a WHOLE than anyone has been able to imagine or try to predict, especially when these thoughts are coming from a cohort that isn’t marginalized and is not able to be authentically empathetic. I actually hope that my mind can be changed.
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Navigating the healthcare system as a non-binary, QBIPOC individual can be a daunting task, especially when facing chronic pain and autoimmune issues. Over the past three years, I’ve endured debilitating pain while working physically demanding jobs, without support from family or friends, despite their proximity.
This isolation is exacerbated by the lack of understanding and adequate response from healthcare providers, often leaving me feeling powerless and disbelieved.
Despite living near family and previously having friends within reach, I’ve been left to face these challenges alone. The loneliness isn’t just physical; it’s profoundly emotional and systemic. The very institutions that are supposed to provide care often leave me navigating a labyrinth of dismissals and dead ends.
Professionals within these systems have told me outright, “I don’t know how to help you,” leaving me counting down the days to potential homelessness, unheard and unsupported.
Living with chronic pain, navigating complex medical conditions, and facing systemic indifference in healthcare have been my relentless reality. As I write this, I am enduring an intense migraine, a manifestation of the trigeminal neuralgia that adds to my daily battle against pain (a new added symptom that resulted from what should have been a simple dental procedure). My conditions — Ehlers Danlos Syndrome, ADHD, and being neurodivergent — compound my challenges, making everyday tasks and interactions exceedingly difficult.
My journey has shown me that even in a city filled with resources, personal connections don’t always translate to support. Former friends have not only drifted away but also hesitated to refer me for job positions, a simple act that could have made a significant difference. This isolation is not just about lacking a support network; it’s about existing in a system that seems designed to overlook individuals like me.
AI technology, however, has brought a sliver of hope and empowerment. In moments of intense isolation and systemic failure, AI tools have provided me with detailed, unbiased medical information and guidance. At times, it has even “corrected” a horrible therapist appointment as I record them and ask it how its advice would differ. For example, I just got an MRI on Sunday (at 7am and also had to deal with a nurse not putting in the IV right and having to deal with potential compartment syndrome) — I still haven’t received any information the findings of the MRI. So I took to Chat GPT and the AI system broke down the report into understandable terms and suggested a comprehensive treatment plan — something no doctor had taken the time to do. I’m still waiting, in debilitating pain, but trying to take a more aggressive approach when I have energy spikes.
Recently, I experienced both the limitations and potential of automated systems in healthcare. I used a service called Twentyeight Health (a company referred to me through the FreshEBT app as I was checking my food stamps balance) and I was able to obtain birth control, hoping for a non-pill option suitable for my autoimmune conditions. Despite the convenience of receiving medication in just three days without direct human interaction, the service did not meet my specific health needs, providing me with an unsuitable pill option. It also left me questioning, how come birth control was easier to get than an MRI for emergent issues?
This incident highlights a broader issue: the need for AI and technology to better cater to individual health requirements, especially for underrepresented and misunderstood communities like QBIPOC. AI has the potential to transform healthcare delivery by providing personalized, accurate, and accessible information directly to patients, empowering them to make informed decisions about their health.
AI’s impact was profoundly evident when I turned to AI-based tools for clarity on my health conditions. Unlike some of my previous interactions with healthcare professionals, AI provided straightforward answers without bias or misdirection. This experience starkly contrasted with repeated referrals to social workers when I sought medical help, which did not address the root of my health issues and left me feeling undervalued.
I have been in the tech field for over 20 years, constantly earning 6 figures, and wearing many hats but getting paid for one, and recently, it was like I couldn’t even get an administrative assistant position. I was ready to give up. Like, if I have no family, no friends, no purpose, and poor health, what is the point?
As a non-binary individual, I’ve faced unique challenges in the healthcare system, where my identity sometimes influenced the quality of care and support I received. It’s crucial for healthcare professionals to recognize and adapt to the needs of diverse populations, ensuring that all patients receive respectful and effective care.
This experience with AI has not only provided me with information but also with a voice. It’s a voice that I plan to use to call for change. The need for systemic reform in healthcare to better serve those with complex, chronic conditions is glaring. Where personal advocacy fails due to exhaustion or systemic barriers, AI has stepped in to assist, guide, and empower.
Despite these challenges, I am motivated to use AI to advocate for change and improve healthcare access and quality for others facing similar struggles. While the idea may seem ambitious, the potential for AI to provide support where traditional systems fail is immense. As I share my story with local media and through platforms like 6ABC and NBC10, I aim to highlight the critical role of AI in empowering patients, especially those from marginalized communities.
I was battling unemployment up until about a month ago, but the medical debt, and identity theft (yeah that’s happening too), and lack of resources and support and continual financial hardships that I can’t share publicly (without someone writing me in my inbox as to if that will hurt me online, but I’m asking for help), yet I remain committed to advocating for a healthcare system that believes and supports its patients. Through AI, we can build a more inclusive and responsive healthcare environment that truly serves everyone, regardless of their background or identity.
Calling for Support in a Healthcare System That Overlooks the Marginalized
I’m using this platform to call for attention to these issues. I urge healthcare professionals, policymakers, and community leaders to consider the struggles of individuals like myself who are often pushed to the margins.
We need a healthcare system that is as responsive and adaptive as the technology that now serves as my interim advocate.
My conditions might be complex, but the need for compassion, understanding, and action is simple.
Where did I go wrong? I didn’t. The systems designed to support us are failing many of us. As I continue to advocate for change, I ask for recognition, not just as a patient or a statistic, but as a person who is fighting every day not just to live but to live with dignity.
This isn’t just my fight; it’s a call to action for anyone who believes in a healthcare system that truly cares for all its constituents. Together, let’s ensure that no one has to face their darkest days alone.
Oh, and just so you can see, here’s a screenshot of the treatment plan that AI created for me and the doctors suggested I reach out to. While my list remains full, and I just learned that I may need spinal fusion surgery and dealing with Adenomyosis, occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus, basically the opposite of endometriosis. It also explains my miscarriages and other symptoms that people in my life just ignored, or shrugged as I was left to grieve alone.
Oh and remember empathy? AI can be programmed with synthetic empathy, which is something I have been doing with over 1000+ conversations over the past year and a half, and I can’t wait to share my findings.
