Women of the Rare Disease World: SPEAK UP!

Here’s the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought in for an examination, while the woman is told to sit down and wait for the next available doctor. As her pain increases, she cries out. The doctor pokes his head through the door and says, “Calm down! We’ll be right with you. You’re probably having an anxiety attack.”


Not according to the Cardiovascular Research Foundation who found that women presenting heart attack symptoms are seven times more likely to be misdiagnosed and turned away from treatment, thus doubling their chance of dying from the cardiac event. The problem is not just for heart and hereditary angioedema (HAE) patients.

The fact is, women’s pain is taken less seriously than that of their male counterparts.

Woman in pain
Source: https://encrypted-tbn0.gstatic.com

In a recent article published by The Atlantic magazine, one man described bringing his wife to an emergency room only to have her be ignored for hours. He was finally able to insist she be examined, and wondered what would have happened if he hadn’t been there to advocate on her behalf? Especially when it turned out she had a life-threatening condition.

Women have historically been taught not to “make a fuss,” “don’t be a bother,” “don’t cause anyone to be inconvenienced.” In fact, one group that calls itself a “religion” insists its female members give birth in total silence. In other words, no matter what pain they are experiencing, they are not supposed to make a sound. It is this type of subjugation that women around the world are still experiencing.

Comic: That's an excellent suggestion, Mrs. Triggs. Perhaps one of the men here would like to make it.
Source: http://2.bp.blogspot.com

Women with complex regional pain syndrome (CRPS) have often reported being dismissed by the medical community.

Because CRPS is so rare, most treating medical personnel have no experience diagnosing it, let alone treating it, so they go without relief from their pain and discomfort. Males with CRPS are more likely to be treated for their pain, even if the cause is unknown. After all, they aren’t “hysterical” women, so how could their pain be imaginary?

When women speak up, they’re perceived as b*****y, but when a man asserts himself, he’s in control and knows what he’s doing. This old doggerel is still true from the boardroom to the emergency room.

So, if you’re a woman, the next time you have to visit an emergency room, make sure the doctor has on his or her “listening ears” and don’t be afraid to make a fuss, be an inconvenience, or even a (heaven forefend) a b***h! It’s your life, not theirs.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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