Navigating Invisible Illness in the Age of Modern Medicine

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Much has been about said about empowering and educating patients to be partners in the healthcare dance. From the e-patient and e-health revolutions through the piles of research showing more engaged patients have better outcomes, all seem to point a more active role and increased responsibility for the patient in his or her own care. But how does that work when the illness is not clearly defined, is not easily diagnosed or for which effective treatments are limited? What does it mean to be an empowered patient with an invisible illness?

This is the question that many women face on a regular basis. Indeed, for a number of predominantly female disorders, whether hormonally modulated or not, there are often many years before the symptoms are addressed as real and not figments of the female imagination. Chronic fatigue and fibromyalgia are two such examples, but so are endometriosis and an array of other perhaps more subtle hormone conditions.

During those years before modern medicine and the research community recognize the reality that define a particular disease process; during the years when women are prescribed psychiatric meds for non psychiatric conditions; during the years when pain medications with diverse side-effect profiles blur the line between the original disease and the one that is induced pharmacologically; during those years, how does one become the e-patient, the e-woman, without becoming a physician herself?

Really, we want to know.

One of the great disruptions to knowledge and power over the last decade has been our ability to spread information via social media. Who could have predicted that entire governments would fall because of a 140-character social sharing tool called Twitter? But that is exactly what has happened. Discontent was shared, it grew more focused and action became possible.

The same is happening in medicine. People, who formerly suffered in silence, can now reach out and communicate with others worldwide. Information, once accessible only to an elite few is readily available online. The information is complex and requires a degree of literacy not expected even a decade ago, but it is there and it is available. Patients are becoming experts about their own health.

The invisible illness remains invisible only if we let it. The unknown remains unknowable, only if we ignore it. Do we have to become physicians and treat ourselves? No, but we have to become educated in way no generation before us has. We have to seek, find and even drive the research community towards the goals that will improve our health. This cannot happen in a vacuum. Social media can help, but only if we talk, share and learn.

This issue of the blog is about empowerment and learning. We know there are women out there that have overcome great health obstacles in the area of hormone health. We know there are women who have become their experts in their own health. Share your stories. Help guide other women through this path. Let us feature your story on the carousel above.

Chandler Marrs MS, MA, PhD spent the last dozen years in women’s health research with a focus on steroid neuroendocrinology and mental health. She has published and presented several articles on her findings. As a graduate student, she founded and directed the UNLV Maternal Health Lab, mentoring dozens of students while directing clinical and Internet-based research. Post graduate, she continued at UNLV as an adjunct faculty member, teaching advanced undergraduate psychopharmacology and health psychology (stress endocrinology). Dr. Marrs received her BA in philosophy from the University of Redlands; MS in Clinical Psychology from California Lutheran University; and, MA and PhD in Experimental Psychology/ Neuroendocrinology from the University of Nevada, Las Vegas.

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