Ready to read? Before you do, make sure to check out Parts 1 and 2 of Tracy’s story. In Part 1, Tracy describes the symptoms that led her to pursue a diagnosis. Part 2 dives deeper into what systemic mastocytosis is and the research Tracy has gotten involved in at the NIH. Today, we discuss living with and managing mastocytosis, her blog, and advice for others. 

Living With and Managing Systemic Mastocytosis

Throughout her journey and her time at the NIH, Tracy has also learned how to live with her mastocytosis. She currently manages her condition with regular daily medication to control the hives. Each year, she must visit the NIH as part of the natural history study; she also has a blood work routine with her oncologist to monitor any disease progression. On most days, she is able to shower normally (though hot tubs remain off limits!). Summer and physical activity can be as tough for her as the debilitating brain fog, but listening to herself and learning her triggers has helped her sustain a quality of life.

The neuropsychological toll of living with a rare disease is one of the most challenging parts of managing her condition—and one that she is still working on coming to terms with. She explains:

“It is one thing to be diagnosed with a rare disease and another to learn how to live with that changing identity on a day-to-day basis. I have all the scientific answers I will ever need and the ongoing medical support to manage this condition. I know I am among the lucky ones. I am accepting that a version of my old self is gone and I am working to form new lifestyle habits that accommodate the disease.

But there is a deep level of isolation and loneliness that comes with a rare disease that nobody really understands or knows about. Rare disease patients experience discrimination that is distinctly different from other diagnoses. Our diseases are something we have to live with forever and we have to find peace existing in ambiguity, never knowing if or when it might progress. And because I was born with a healthy body, it took me a bit of time to feel the loss of the privilege that accompanies forward thinking. I tasted the destruction of my existence in a way a person born sick may not—to have and to lose rather than to never have at all.”

In the future, Tracy hopes that more research centers on the psychological turmoil and emotional fatigue associated with rare conditions. While most people focus on the physical attributes of the disease—and while these are still crucial to study—understanding how people psychologically cope with rare diagnoses which change neurobiological processes, and whether diagnosis impacts life choices, would help the medical field to better assist patients.

Daretoberare.me

To cope with the manifestations of systemic mastocytosis, and to document her journey amidst the pandemic, Tracy turned to blogging on her website: Daretoberare.me. In Chapter 2, she wrote about quality of life, finding community, and the support she found in her network. Her website was her greatest refuge during her diagnosis and treatment process and is even the foundation for a working memoir.

Through sharing her story and continuing to advocate for improved medical and scientific practices, Tracy hopes to mobilize pharmaceutical companies and other organizations to focus on the rare disease community. Because so many companies have no interest in rare diseases because of the small community size, patients can feel helpless and hopeless about the possibility of a cure.

Other topics covered on her site include her changing relationship with time and the discriminations that accompany rare diagnoses. For example, she has dealt with numerous issues associated with life insurance. Recently, her applications for life insurance were denied. Tracy shares:

“It’s made me feel defective, as if my life is not worthy of protection. How am I not ill enough to qualify for disability benefits but not healthy enough for insurance protections? If I’m trying to plan a family, how does this impact my decisions when I’ve lost the safety net that is available to able bodied people? These policies and practices perpetuate medical trauma and impact the decisions we make for ourselves and our future. We’re often left without opportunity to actually make a decision to help ourselves because the system doesn’t support it.”

Advice for the Newly Diagnosed

Since 2020, Tracy has persevered. She balanced a career in education during COVID-19, donated her body to medical research for 18 months, and lost her father after being terminated from the research study following dose six for protocol safety purposes. Facing her own mortality while burying her father and trying to manage a leadership position at work manifested layers of grief that forever changed her. Tracy says:

“While I know I lost some version of myself in the stress of it all, I have never been more committed to living purposefully. It’s my decision to choose how I will live with this disease rather than give it power to define me.”

In line with this powerful mindset, Tracy is also committed to helping others to come to terms with their diagnosis and take control of their own power. She leaves others who are at the start of their diagnostic journey with some poignant advice:

“Be patient and always advocate for yourself. I know it may not seem like it now, but you’ll become an expert in your condition. Learn it, know yourself, trust your gut if you think you need a second opinion, and never stop fighting for your rights.”