Your Health, Your Voice: Why Advocating for Yourself in Medicine Matters

Granddaddy was a feisty one. A farmer and a carpenter, he was accustomed to finding ways to do what others said couldn’t be done. So, when a doctor told him back in the early 60s that he had ten months to live, he laughed. Ten years later, he was still laughing at the diagnosis, and he continued laughing for another 12 years after that! He really wasn’t going to give up!

Maybe you’ve heard stories like this, or perhaps you’ve lived one yourself. A loved one gets a devastating diagnosis, a grim prognosis measured in mere months, yet somehow defies the odds and lives for years, even decades longer, filled with vitality – like the grandfather mentioned by a friend who laughed about his initial ten-month prediction for twelve years after hitting that mark, and lived another dozen beyond that! Or perhaps you know the frustration echoed in countless stories, especially among women: “It took five doctors before someone finally listened and diagnosed my endometriosis.” These experiences, while different, point to a shared truth in navigating healthcare: the first opinion isn’t always the final word, and the standard approach isn’t always the right one for you.

We place immense trust in our doctors and the medical system, and rightly so. Their expertise is invaluable. But medicine is complex, human bodies are unique, and sometimes the initial diagnosis is incomplete, the standard treatment doesn’t work, or the system itself has gaps that leave people behind. In those moments, becoming an active, informed advocate for your own health isn’t just helpful – it can be absolutely critical, even life-saving. The compelling journeys of patients like Michael Wolff and Emily Kramer-Golinkoff powerfully illustrate why your voice matters so much in your own healthcare story.

Defying the Odds: When Personalized Science Rewrites the Prognosis

Consider Michael Wolff, a renowned jazz musician. He diligently underwent 18 months of intensive treatment for what was diagnosed as follicular lymphoma. But instead of getting better, he got sicker. His oncologist, recognizing the standard approach was failing, referred him to a specialist, Dr. Mrinal Gounder at Memorial Sloan Kettering. A new biopsy revealed the devastating truth: Wolff actually had an extremely rare, aggressive blood cancer called histiocytic sarcoma, possibly even triggered by the earlier lymphoma treatments. Dr. Gounder, having seen only about 10 such cases before, delivered a crushing prognosis: Wolff likely had only two months to live.  

This is where passive acceptance could have ended the story. But it didn’t. While Wolff endured another round of largely ineffective chemotherapy, Dr. Gounder pursued a path beyond the ordinary for that time (about a decade ago). He ordered advanced genetic sequencing of Wolff’s specific tumor. The results took weeks but revealed unique genetic mutations – potential clues hidden within the cancer itself. Based on one specific mutation, Dr. Gounder proposed a highly unconventional treatment: Mekinist, a pill typically used for melanoma, which had never been used for histiocytic sarcoma. As Wolff recalled, when he asked about the research supporting this, Dr. Gounder replied, “You’re the research.”  

Making the decision to try something completely untested, based solely on his individual genetic data, was an act of profound trust and self-advocacy on Wolff’s part. He chose to participate actively in finding his solution, refusing to be defined solely by the standard prognosis for a rare disease. The results were, in his words, “a miracle.” Within days of starting the “little sugar pill,” his chemo side effects vanished. A scan just ten days later showed an astonishing 80% reduction in his tumors. Today, ten years after being given months to live, Michael Wolff is considered cured, back to his vibrant career performing music around the world – a testament to looking beyond the standard playbook.

Fighting Systemic Gaps: When the Breakthrough Leaves You Behind

Emily Kramer-Golinkoff’s story highlights a different, perhaps even more frustrating, challenge where advocacy becomes essential. She lives with advanced cystic fibrosis (CF), a devastating genetic disease. Unlike Wolff, whose initial standard treatment failed, Emily lives in an era where miracle drugs – CFTR modulators – exist and have transformed life for about 90% of people with CF. The agonizing problem? Emily is in the 10% who have a specific rare genetic mutation means those standard breakthrough drugs simply don’t work for her.  

She experiences the heartbreak of being “left behind,” watching friends with CF regain their health thanks to these modulators while her own lung function declines (down to 30%), requiring constant care and limiting her life despite her “big dreams.” This isn’t just a scientific hurdle; it’s compounded by what Dr. Kiran Musunuru calls “mutational discrimination.” Developing drugs is incredibly expensive, and pharmaceutical companies understandably focus R&D on treatments targeting the most common mutations affecting the largest patient populations. Those with rare mutations often become commercially non-viable targets.

What does advocacy look like when the existing treatments, even advanced ones, don’t apply, and market forces work against you? For Emily, it meant going beyond seeking different doctors. She co-founded a nonprofit, Emily’s Entourage, dedicated specifically to raising funds and accelerating research into mutation-agnostic therapies – treatments, like gene therapy delivering a correct copy of the CFTR gene, designed to work for everyone with CF, regardless of their specific mutation. Her advocacy is a fight to change the system itself, to push science and funding towards solutions for those overlooked by the standard breakthroughs. Her hope, and that of thousands like her, rests on this tireless advocacy driving the next wave of innovation.  

“It Took Five Doctors…”: Recognizing the Need for Persistence

These dramatic stories echo experiences familiar to many facing less rare but still challenging health issues. How many of us know someone, perhaps ourselves, who endured months or years of symptoms, seeing multiple doctors, before finally receiving a correct diagnosis for conditions like endometriosis, autoimmune disorders, or other illnesses often dismissed or misdiagnosed? The phrase “It took five doctors before someone finally listened…” is almost a cliché, sadly reflecting a common reality.

This underscores that seeking a second, third, or even fourth opinion isn’t necessarily “doctor shopping” – it’s often a vital part of the diagnostic process when initial answers aren’t sufficient or symptoms persist. Trusting your own body and experience, and persistently seeking answers until you find them, is a valid and necessary form of self-advocacy.

What Does Being Your Own Advocate Look Like?

Becoming an active participant in your healthcare doesn’t mean you need to be a medical expert, but it does involve engagement and persistence. It often looks like:

• Asking Questions: Don’t hesitate to ask “why,” to ask for explanations in plain language, to understand all your options, the potential side effects, and what happens next.
• Doing Your Homework: Learn about your condition from reliable sources (major health organizations, reputable medical sites, patient advocacy groups) so you can have more informed conversations with your doctor.
• Tracking Your Experience: Keep a log of your symptoms, when they occur, what makes them better or worse, how treatments affect you. You are the world’s leading expert on your body.
• Seeking Second Opinions: If you have doubts or if treatment isn’t working, getting another perspective from a qualified professional is always reasonable.
• Finding the Right Fit: Look for doctors who listen actively, take your concerns seriously, treat you as a partner in decision-making, and are willing to think creatively or refer you to specialists when standard approaches fall short.
• Connecting with Community: Patient support groups can offer invaluable practical advice, emotional support, and information from experienced specialists or new research.

Your Voice Matters in Your Health Journey

Michael Wolff’s story shows the incredible power of personalized medicine driven by looking beyond the standard diagnosis. Emily Kramer-Golinkoff’s fight highlights the systemic advocacy needed when even breakthroughs leave people behind. And countless everyday experiences remind us that persistence is often key to getting heard.

The common thread is the undeniable importance of patient advocacy. While we rely deeply on the skill and dedication of healthcare professionals, the journey to health and healing is ultimately yours. Being an active participant – asking questions, seeking knowledge, sharing your experience honestly, and persistently pursuing the care that feels right for you – isn’t just empowering; it can genuinely change your outcome. Your voice, your experience, and your advocacy are essential parts of your health journey.