By Orly Benaroch Light

Self-advocacy becomes a crucial lifeline in a healthcare system often riddled with biases and hurried consultations. As patients, our insights into our own bodies must be heard, especially when standard medical procedures overlook the unique needs of individuals. I learned this the hard way. In the summer of 2016, I found myself caught in a whirlwind of missed diagnoses and dismissive attitudes, leading to a life-threatening health crisis. My journey unveiled not just a personal battle but a systemic issue that begs us to become our own most vigilant health advocates.

My Experience with Misdiagnosis

Plagued by thunderclap headaches and esophageal spasms, my frustration with male physicians who had previously downplayed my concerns drove me to consult a female physician. I hoped for empathy and a thorough investigation. Instead, I was met with a diagnosis attributing my symptoms to hormonal imbalance, stress, and fatigue, followed by a prescription for antidepressants. Unsatisfied and trusting my instincts, I demanded an endoscopy. The push for further investigation was not an act of panic but a calculated decision born out of the experience of having been a physician’s wife and the self-awareness I had of my own body. My persistence led to the discovery of H. pylori bacteria, finally uncovering the real cause of my ailments.

The Crisis: Brain Bleed

On Aug 12, after a grueling 15-hour workday, I faced a terrifying reality: I woke up to find my right leg motionless. Though initially dismissing it as numbness from sleep, a chilling realization set in that something was terribly wrong. The frantic call to 911 and the ensuing ambulance ride to the hospital were a blur. Surrounded by a flurry of activity as nurses hooked up devices and whisked me into brain scans and an MRI, the diagnosis hit like a sledgehammer - Intra Cerebral Hemorrhage (ICH), a brain bleed. The chilling question loomed, "Why hadn't I demanded diagnostic testing for my thunderclap headaches?" The doctor explained that ICH occurs when blood leaks out of a blood vessel into the brain. It has a 40% to 50% mortality rate or major disability. It was a moment of harsh self-reflection, realizing even with my background in the continuing medical education field and a strong set of instincts, I had failed to fully advocate for my health.

Surviving a brain bleed is a feat in itself, and my gradual recovery was miraculous. Three weeks of intensive physical therapy in the hospital, followed by a year of continued recuperation, led me back to working full time and experiencing a new normal. The ordeal brought personal resilience into focus and glaring insights into a flawed healthcare system. A system that often fails to listen, understand, and investigate deeply, urging us to take control and be relentless advocates for our well-being.

Gender Bias in Healthcare

Gender bias in healthcare is a disconcerting reality that affects both diagnosis and treatment. While men comprise 64% of physicians globally, medical standards predominantly focus on male physiology, often overlooking how symptoms manifest differently in women. This male-centered approach extends to pharmaceutical trials, where drugs are frequently tested exclusively on men. Such biases result in a system that can misinterpret or minimize women's health issues. The difference in symptom manifestations between genders further complicates the issue, underscoring the urgent need for increased awareness and personalized care that recognizes and respects the uniqueness of women's health.

Tools for Self-Advocacy

Navigating the complex landscape of healthcare requires more than just relying on medical professionals. In a system where time is often constrained, and personal nuances can be overlooked, self-advocacy becomes vital. By taking an active role in your health care decisions, you become a partner in your care rather than a passive recipient. The following tools and strategies can empower you to take charge of your health, ensuring that your unique needs and concerns are addressed with the attention and care they deserve.

Bring Notes and Research

Arm yourself with information. Write down symptoms, research credible sources, and present your findings. This preparation empowers you to communicate effectively, making your limited time with healthcare providers more productive.

Listen to Your Body

You know your body best. Trust your instincts, and don't downplay symptoms that feel off. Your internal awareness can guide you to the correct diagnosis.

Utilize Your Support Network

A health advocate, friend, or family member can support your healthcare journey, providing guidance and encouragement. Their presence can make advocating for yourself easier.

Request Information About Treatment

Inquire about medications, side effects, and alternatives. Understanding the implications of treatment options ensures that you're making informed decisions tailored to your specific needs and comfort levels.

Manage Your Care

Coordinating care between physicians is vital. Facilitate communication among specialists and primary care to ensure everyone is aligned, optimizing your treatment.

Get Second Opinions

Don't hesitate to seek multiple opinions. Different perspectives can validate a diagnosis, suggest alternatives, or reveal new treatment avenues.

Look for a New Physician

If your physician dismisses your concerns or isn't meeting your needs, find a new one. The right physician will partner with you in your health journey, respecting and addressing your concerns.

Taking Charge of Your Health: A Call to Action for Every Woman

In a healthcare landscape fraught with gender bias and systemic challenges, self-advocacy for women becomes not just beneficial but essential. Recognizing the need to speak up and actively participate in healthcare decisions is a critical step toward personalized, attentive care. Let us embrace the tools and strategies available to us, empowering each other and ourselves to make informed, confident choices in our healthcare journeys. The quest for well-being starts with the courage to advocate for oneself, and every woman deserves a voice in shaping her health and future.