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What is Your “I Have Lupus” Elevator Speech?

Posted on February 16, 2017

Image credit: Martin Shovel

You can always feel it coming. Your lips hover over the rim of your glass in a polite smile as your new acquaintance chortles over the newest viral cat video. You try in vain to empty your glass and excuse yourself for another, but the words come much too swift, racing over the crescendoed buzz of the crowded room.

“So… what do you do?”

It’s a social nicety we’ve all come to expect and depending on where we are in our lives, it can be a loaded question. Out of all the tedious small talk topics, the answer to this question has always required a deep, preparatory breath in. Back when I was in university, I prepared myself for judgement over what many viewed as an impractical and useless degree. Years later, when I was on sick leave for six months, I sweated over explaining why I could no longer take care of myself or do my job like a normal person. And now that I’m half-time, I struggle with how much to reveal in regard to why I work less. The “I have lupus elevator speech has always been a challenge for me. In business, an elevator speech or pitch is the short, succinct expression of an idea, a company, product, etc. that is approximately two minutes, or the average length of an elevator ride. In this specific case, the goal is creating a short and sweet explanation of how lupus has affected my work life that doesn’t make anyone feel uncomfortable, myself included. How much do you say? Should you say anything at all? Do you avoid the question? Do you tell a white lie? These days, I am so open about having lupus, I have a real fear of doing this.

The overshare monster is definitely worse than the cooing cat video addict. Anyone who hears, “I work half-time because five years ago, lupus-related brain inflammation made me lose my mind,” is guaranteed to feel awkward. And although I’ve never quite said it in that way, I’ve definitely given more information than necessary, the kind that I normally keep to the pages of this blog. The whole concept of a lupus elevator speech made me think about the patient’s role in lupus public awareness. How can I spread awareness beyond the lupus-sanctioned months of October and May? What are the small things I can do everyday? Writing in my blog and my twitter account primarily connects me with people who know about lupus already, so I’m preaching to the choir. So, when I have the opportunity to let cat video guy know that lupus exists and that, yes, I have it and that I’m not ashamed of it, shouldn’t I do that? More often than not, my standard, quick response is, “I’m half-time for health reasons.” The person I’m talking to usually refrains from asking questions and instead of feeling relieved, a strange sense of guilt washes over me. It’s a half-truth, but I feel like I’m lying. What is the balance between being honest, doing your small part in promoting awareness, and oversharing? Especially during the holiday party season, I’m hyper aware that I need to give my “I have lupus elevator speech some serious thought.

What is your elevator speech? What do you say when you face questions that can’t be answered truthfully without mentioning lupus? How do you promote awareness in your everyday life? Tweet me @ElenaAnciro or comment below. I’d love to hear your thoughts!

This post originally appeared here and is reposted with permission.
Elena has suffered from arthritis and pericarditis (inflammation of the heart lining), and was officially diagnosed with lupus in 2001 at the age of 20. She is a chronic night owl/aspiring early bird and a textbook Gemini who tries to see the glass half full. Despite lupus, she has run two 10Ks and started dance lessons.

A MyLupusTeam Member said:

What a good subject. It was recommended to me by HR staffers that you should never bring this up as it will open the organization up to a law suit. It equivalent to asking a women if she’s pregnant.

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