Hillary’s Journey: Living with Lupus and POTS

Key Takeaways

• Among other diseases, Hillary has been navigating severe lupus and postural orthostatic tachycardia syndrome (POTS) for nearly two decades.
• Before opening up about her health journey, Hillary quietly battled chronic pain, fatigue, and many other symptoms, while still managing to build a successful career in the criminal justice and community supervision field.
• Today, Hillary juggles various forms of treatment, including multiple four-hour infusions every week, injections every 72 hours, and a long list of medications designed to control inflammation and protect her organs.
• Guided by her resilient optimism, Hillary has continued to build a career she cares deeply about, while mentoring and supporting others, allowing her to make a real difference in the world.

Support, Purpose, and the Power of Being Seen

Much of Hillary’s life has felt like an iceberg. While others saw the successful career she was building in the criminal justice and community supervision fields, much of what she carried remained hidden beneath the surface.

Throughout her career in court administration, probation, pretrial supervision, community corrections, and grant management, Hillary was quietly navigating multiple chronic illnesses, including lupus and postural orthostatic tachycardia syndrome (POTS). The fatigue, pain, dizziness, and medical complexity that accompanied these conditions affected nearly every aspect of her life. Yet, she continued mentoring colleagues, speaking nationally, and contributing to systems designed to help others.

For years, Hillary believed strength meant keeping her struggles hidden. She pushed forward, determined not to let anyone see how much she was carrying. Looking back, she realizes that resilience is not about pretending everything is fine; it’s about continuing to move forward while acknowledging the reality of what you face.

A Long Road to Diagnosis

Like many people living with autoimmune disease, Hillary’s path to diagnosis was neither quick nor straightforward.

Long before receiving a formal diagnosis, she experienced a growing list of symptoms, including fatigue, dizziness, inflammation, nerve and bone pain, and cardiovascular complications. The symptoms became increasingly difficult to ignore, yet finding answers proved frustratingly complicated.

Although she tested positive for lupus markers for seven years, her concerns were repeatedly minimized. At times, she was told the results were likely false positives or that she simply needed to manage the discomfort better.

Unfortunately, by the time a rheumatologist ultimately confirmed her diagnosis, irreversible damage had already occurred.

Today, Hillary hopes her story encourages others to trust their instincts, continue seeking answers, and advocate for themselves when they know something is wrong.

Living with Lupus and POTS

Over time, Hillary’s illnesses became progressively more severe.

Lupus, an autoimmune disease that can affect multiple organs and body systems, brought challenges ranging from inflammation and chronic pain to kidney complications and anemia. POTS added another layer of complexity, affecting her heart rate, blood pressure, circulation, and energy levels.

Even today, daily life requires constant adaptation.

Hillary manages an intensive treatment regimen that includes multiple four-hour infusions every week, injections six days a week, and numerous medications designed to control inflammation and protect her organs. Recently, she had a port implanted to continue long-term infusion therapy safely.

One of the most difficult aspects of autoimmune disease is its unpredictability. A day that begins feeling manageable can quickly become debilitating. As a result, Hillary has learned to pace herself, conserve energy, and make thoughtful decisions about where and how she spends her limited resources.

Navigating a Career While Managing Chronic Illness

Autoimmune diseases impact women in the workforce. For Hillary, maintaining a demanding professional career while managing severe autoimmune disease created enormous pressure.

Early in her career, Hillary worried that revealing her illness would change how others perceived her. She feared people might question her competence, leadership abilities, or reliability if they understood the full extent of her health challenges.

As a result, she continued working through chemotherapy, biologic infusions, and significant symptoms while trying to ensure no one noticed how much she was struggling physically.

That pressure came at a cost.

The emotional burden of managing both illness and perception became exhausting. Over time, Hillary found herself caught between the expectations she placed on herself and the realities imposed by her health.

Eventually, she began redefining what strength meant.

Rather than viewing strength as pushing through pain at all costs, she learned to see it as listening to her body, setting boundaries, and adapting when necessary. She stopped viewing rest as weakness and began prioritizing long-term health without sacrificing her ambition or sense of purpose.

That shift allowed her to build a healthier relationship with herself while continuing to pursue meaningful work.

The Importance of the Right Care Team

One of the most meaningful developments in Hillary’s journey was finding a rheumatologist who truly listened, demonstrating the importance of finding the right medical provider.

After years of delayed diagnoses and uncertainty, finding a physician who believed her and treated her as a whole person was life-changing.

Hillary describes her relationship with her rheumatologist as a genuine partnership built on trust, collaboration, and mutual respect. He understands not only her diagnoses, but also her goals, values, and quality-of-life priorities.

Rather than focusing solely on disease activity or lab results, her physician considers how treatment decisions affect every aspect of her life, including her career, relationships, independence, and long-term well-being.

That level of understanding helped Hillary feel more confident advocating for herself and participating actively in decisions about her care.

Barriers to Care and the Need for Advocacy

Even after finding a care team she could trust, Hillary continued to encounter significant barriers within the healthcare system.

Accessing medically necessary treatment often requires ongoing battles with insurance companies. Each year, she must navigate prior authorization requirements for biologic infusions and POTS treatments. Delays can lead to treatment interruptions, painful flares, and setbacks that affect both her health and quality of life.

One particularly painful experience occurred when an insurance representative told her she “wasn’t worth the investment” because she would never fully recover.

Moments like that reinforced how dehumanizing healthcare systems can sometimes feel for people living with chronic illness.

Yet rather than becoming discouraged, Hillary has continued advocating for herself and for greater awareness of autoimmune disease and treatment access.

Paying It Forward

Living with chronic illness changed far more than Hillary’s physical health. It shaped the leader, mentor, and advocate she would become.

The resilience, adaptability, and perspective she developed through years of navigating lupus and POTS ultimately influenced the way she approaches both her career and her relationships with others. Through her work in the criminal legal system, pretrial services, and community supervision, Hillary became deeply committed to helping people rebuild a sense of identity beyond their circumstances.

Living with chronic illness taught her firsthand what it feels like to be reduced to a diagnosis, limitation, or label. Over time, she realized many of the people she served were experiencing something similar.

Whether someone was being defined by a criminal charge, addiction, trauma, poverty, mental illness, or a difficult chapter in their life, Hillary believed they deserved to be seen as whole people—not as a single characteristic or circumstance. Her own experiences navigating illness strengthened her belief that people are far more than the labels others place on them.

“I keep showing up because I believe people deserve to feel seen,” Hillary says. “I wanted people to know they still had value even when the world reduced them to labels, mistakes, diagnoses, charges, addiction, trauma, poverty, or hopelessness.”

For Hillary, helping others was never simply about supervision, compliance, or case management. It was about helping people recognize their worth and potential, even when they struggled to see it themselves. She believes one caring, consistent person can change how someone sees themselves and their future.

Living with chronic illness also gave Hillary a deeper understanding of perseverance, vulnerability, and the importance of human connection. She knows what it feels like to carry invisible burdens, navigate uncertainty, and continue moving forward despite challenges others may never fully understand. Those experiences strengthened her commitment to showing up for people during difficult moments and reminding them that they are not alone.

And despite everything she has endured, Hillary works intentionally to remain open-hearted. “I fight very hard to stay soft,” she says. Rather than allowing pain, disappointment, or illness to make her cynical, she chooses to keep caring, keep believing in people, and keep finding reasons for hope. That decision—to remain compassionate in the face of adversity—has become one of the defining principles of her life.

For Hillary, resilient optimism is not about pretending life is easy. It is about acknowledging hardship while continuing to move forward with purpose. Today, she continues to advocate, mentor, and support others, proving that autoimmune disease may be part of her story, but it does not define who she is.

Moving Forward with Purpose

Today, Hillary continues to navigate lupus, POTS, and the many challenges that accompany chronic illness. She still faces difficult days, demanding treatments, and ongoing uncertainty.

But she also continues to lead, mentor, advocate, and support others.

Her advice to others living with autoimmune disease is simple: trust your instincts, seek providers who listen, advocate for compassionate care, and give yourself grace.

Most importantly, remember that your diagnosis is only one part of your story.

Become Empowered

If you need help managing an autoimmune disease or connecting with other patients, check out the Autoimmune Association resource center for educational materials and community support. Through increased awareness and shared experiences, patients with a story similar to Hillary’s can feel more empowered to pursue informed, compassionate care.