Becoming dynamically disabled: a journey from patient to advocate
January 24, 2025
By Catrina Scott
Catrina Scott, Senior Product Manager for Nursing Solutions at Elsevier, gives a presentation for the Florence Nightingale Foundation opens in new tab/window.
For years, I faced skepticism from those who dismissed my symptoms as job stress or “just in your head.” Now, I work for an employer that enables me to thrive and help others with disabilities.
In a career spanning three decades in clinical software, I have delivered complex Clinical Decision Support products and built exceptional teams. However, these peaks of success were often followed by sudden declines in my health and well-being, leading to extended periods away from work.
For years, I faced skepticism from employers and medical professionals who dismissed my symptoms as job stress or “just in your head.” It wasn’t until I found a compassionate general practitioner who took my concerns seriously and reviewed my personal research that I began to uncover the truth behind my illness.
After six months of consultations with a rheumatologist and a kidney specialist, I received a diagnosis: Seronegative Systemic Lupus Erythematosus, commonly known as ANA-negative lupus. This rare form of the autoimmune disease is particularly elusive, as standard diagnostic Antinuclear Antibody (ANA) tests often yield normal results, causing many clinicians to overlook the possibility of Lupus despite other abnormal clinical indicators.
The journey to this diagnosis took 12 long years, where I progressively endured debilitating physical and mental health challenges. Once a high-performing product manager dedicated to supporting clinicians and nurses, I found myself relegated to disability, relying on walking aids and struggling with daily life. The relentless pain, severe headaches and cognitive fog were overwhelming.
Recovery was a gradual process. The side effects of potent immunosuppressive medications often felt more unbearable than the illness itself. Like many individuals with rare diseases, I had to become an expert in my condition. Five years after diagnosis and aggressive treatment, I began to emerge from a seemingly endless cycle of disease flares, transitioning into the more typical relapse-remission pattern associated with autoimmune disorders.
A pivotal moment came in 2018 when I felt ready to consider returning to full-time work. A former colleague offered to coach me on my next steps. This conversation led to introductions and, eventually, interviews for a position in Clinical Solutions at Elsevier. Throughout this process, I was transparent about my chronic illness, and I was encouraged by my new manager’s focus on my extensive experience and resilience rather than my limitations.
Catrina Scott with her dog Maybe at Twyn-Y-Gaer Hillfort Trig Point, Wales.
By early 2023, however, I sensed I needed to make changes to avoid the resurgence of my lupus symptoms. I was engaged in an exciting project, and we had just achieved a significant milestone: the classification of Software as a Medical Device (SaMD) — a first for Elsevier. Simultaneously, my mother, who had been battling vascular dementia since a major stroke in 2011, was nearing the end of her life. After discussions with my manager, we agreed it was the right time for me to make some changes so I could stay in control of the peaks and troughs and avoid a potential decline in health making those changes for me.
I applied for and was granted a sabbatical — an unpaid year off with the assurance of returning to a role at Elsevier. This opportunity was made possible by the company’s commitment to valuing all employees, supported by an understanding HR team and caring senior management team as well as the Elsevier Enabled Disability Employee Resource Group, which advocates for individuals and families with disabilities.
The sabbatical allowed me to focus on my health and spend precious time with my family as we cared for my mother in her own home until her death. I emerged from this experience better equipped to navigate the complexities of what I now understand as my “dynamic disability.” I am proud to be part of Elsevier Enabled, where I can support colleagues and their families facing similar challenges.
As I continue my career journey at Elsevier, I remain committed to advocating for awareness and understanding of disabilities, neurodivergence and chronic illnesses, fostering an environment where all employees can thrive.
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CS