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What does it mean to be invisible? One patient’s experience with “unseen scars”

Blonde, petite and vivacious, Danielle Cosgrove looks like the very picture of perfect health. However, go beneath the surface and her reality is quite different. In 2010 a terrible accident left her with a condition that is widely recognized as one of the most painful in the world, complex regional pain syndrome (CRPS).

As the first speaker in today's Ignite panel at Medicine X, Cosgrove shared the story of the illness and eventual death of her younger brother. While he looked sick, in a hospital bed with tubes attached to his nose, Cosgrove's affliction is, by contrast, hidden. Her symptoms are debilitating, but not looking the part -- and having what she calls "unseen scars" -- has made finding the support and care she needs a struggle.

Providing a moving account of her own journey on the stage and in the above video, Cosgrove described how her experience of pain was often discounted by others -- including physicians. “Countless times I’ve heard that I’m far too young for that ‘awful medication,'" she recalled. "And I am.”

"Myself and millions of other Americans do not look ill," she told attendees, "but we deserve all the treatment we get and more.” She spoke for all of those who look well yet fight a hidden daily battle. "At the end of the day no one deserves to be or to feel invisible. We are all in this together, and we are all fighting like hell so that we may move from stigma to strength to support."

As the founder of CRPS advocacy initiative Project 3x5, Cosgrove has made it her mission to raise what she calls the "staggeringly low awareness level" of her debilitating condition -- and she hopes to eventually raise funds for research. Her courage in fighting this rare disease and trying to find moments of light in the darkness was embodied by her statement that "while my symptoms cause unrelenting pain, I am here and for the moment I am standing." As she left the stage, the audience stood for her as well.

Previously: On the first day of Medicine X, talking disparities, adversity and hopeMedicine X, the academic conference where "everyone is included," returns and When you say nothing at all: Living with an invisible illness
Video by Stanford Medicine X

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