A personal story about navigating illness, finding purpose, and lessons learned.
By Linda Reinstein, BCPA
Sometimes, life changes with a single sentence—a diagnosis, a decision, a doctor’s voice explaining something you’re not ready to hear. And suddenly, you find yourself in the middle of a health care storm—trying to stay grounded, understand, and speak up. That’s how it started for me.
I’ve always believed that knowledge is power—and when shared, it can truly save lives. This April, due to overwhelming demand, Global Asbestos Awareness Week (GAAW) continues—underscoring the strength of community, the reach of education, and the impact of advocacy. What a meaningful coincidence: it’s also the month I officially became a Board Certified Patient Advocate (BCPA), bringing my personal journey and professional mission full circle.
Before college, I dreamed of becoming a doctor. I studied hard at the University of California at San Diego—drawn to science, service, and healing. However, due to financial hardship, I made the difficult decision to take a break. Life, as it often does, took a turn. I accepted a job with American Airlines, thinking it was a temporary detour. I was wrong.
Years later, when my husband Alan was diagnosed with mesothelioma in 2003, everything changed again. I was terrified—and completely unprepared. I didn’t know the terminology, what questions to ask, or even who to trust. Just learning to pronounce mesothelioma was a challenge—then I discovered it was caused by asbestos and was incurable. What I did know was that I loved him deeply, and I needed to learn fast if I was going to help him through this.
That experience transformed my life. From being Alan’s caregiver to co-founding the Asbestos Disease Awareness Organization (ADAO), and now earning my BCPA credential, I’ve spent the past 20 years walking beside patients and families as they face overwhelming diagnoses, confusing medical systems, and moments where a single question can shape everything.
I remember so clearly during Alan’s treatment—when I asked detailed questions about test results or brought up research on clinical trials, some physicians looked at me with skepticism. They saw me as “just the wife,” not an equal partner in Alan’s care. But I refused to back down. I was there to advocate, to learn, and to ensure Alan had every possible chance. As his advocate, I learned to be fearless. I was fighting for Alan and for our family. I gave myself permission to navigate his mesothelioma journey with clarity, urgency, and love.
That experience didn’t just make me an advocate for Alan—it led me to advocate for myself and our family. For my own healing. For the right to grieve openly. For the transformation of pain into purpose. Grief, too, needs advocacy, as does the long road to healing that comes after loss.
Earning my BCPA credential was a deeply personal milestone. It reaffirmed what I’ve always believed: that knowledge, when paired with intention and compassion, can change lives. I was able to begin this journey because two physicians believed in me. They each wrote letters of recommendation, and with their support, I stepped into the next chapter of my advocacy work.
Through it all, I’ve learned that while every story is unique, the need for clear, compassionate, and confident communication is universal. Whether you’re speaking to a doctor, a loved one, or even yourself—clear, compassionate communication can help turn fear and confusion into clarity and strength.
Why Patient Advocacy Matters
Throughout my journey, I’ve always believed that knowledge is power—and that self-empowerment is essential. Alan and I learned everything the hard way, which is why I’m committed to sharing those lessons to help others. I believe advocacy should be grounded in standards, structure, and support. Becoming a Board Certified Patient Advocate enables me to guide others through their medical journeys, drawing from both personal and professional experience. It also reaffirms my commitment to ethical, evidence-based, and compassionate care.
Patients and families need advocacy. Healing journeys need support. And no matter where you are on your path—you are not alone. If you’re facing a medical challenge, reach out to trained professionals who can help guide you forward.
As GAAW continues throughout April, I hope this blog serves as a reminder that behind every statistic is a story—and that both advocacy and healing often begin with one voice choosing to speak up.
~ Linda