Being mistaken for a cancer patient is part of the unwanted package that is Alopecia. I get that after 11 years as a bald woman. I’m accustomed to the stares, assumptions and accompanying comments. I’ve blogged about it and commiserated with sister Alopecians on the topic. I’m over it - it’s so last year, as the saying goes - until it happens again.
Recently I had a GI test at Moffitt Cancer Center. Yeah, yeah, I know - wearing a beaubeau head scarf to a cancer center is asking for assumptions. I was prepared for the inquisition and was armed with my answers. What I wasn’t prepared for was the argument. Even after identifying myself as an Alopecian (standing proud and tall), I was still peppered with duplicate questions as if to say - we don’t believe you - hair loss equals cancer. I was asked about my port line, if they were able to use the blood pressure cuff on my arm (for those with Lymphedema) and questioned about the date of my last chemo treatment. I’m trying to devise a fireproof plan for avoiding all such assumptions and resulting questioning.
Any ideas? Do I need to paint it on my face in big red letters? Wear a big sign? Ask them to read my unpublished autobiography before proceeding? Maybe just a slip of paper with a medical definition of Alopecia areata would be sufficient. Help!
Susan Beausang, 4women.com
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So true, Denise. It's actually an autoimmune disease and in this case, because I was in a major medical center, I guess I wrongly assumed I didn't have to explain what Alopecia is. I saw so many people that day, all of whom required repeated explanations from me, that I lost track of who I gave the full explanation to vs. the label. I have a number of t-shirts and caps that proclaim me as a proud Alopecian, but I'm guessing wearing them will not help much either. Alas, it may not be changeable. Thanks for the suggestion!
July 29, 2011 - 3:08pmSusan
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I wonder if a simpler answer such as "I don't have cancer but I have a scalp condition that made me lose my hair" would help get the point across. If people don't know what Alopecia is, they might assume it's a different kind of cancer or even a treatment for cancer they've never heard of. I hope you come up with an answer that will help you.
July 28, 2011 - 2:49pmThis Comment
From a distance, it may look or sound like an opportunity to get extra perks and attention. The attention is certainly there, but it's not the type of attention many of us enjoy - pity, fear, sadness at the sight of you. It's a type of attention many cancer patients desperately want to avoid, though recognition as a cancer patient also invites approaches and connections with survivors who can truly empathize. As an Alopecian, we want desperately to be accepted as "assumed to be healthy" because we are in fact healthy, even when you see us in a doctor's office.
Thanks for the ideas!
July 27, 2011 - 1:07pmSusan
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