What is Your “I Have Lupus Elevator Speech?”

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:

Cartoon by @ MartinShovel

by @ MartinShovel

(image source)

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? As the social invites of the holiday season start to roll in, 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!

Now, for some general Face Forward news:

  • You may have noticed that our FF meeting place has a new, wordpress-free domain name: www.lupusfaceforward.com.  I wanted to pay homage to the original domain and blog name (Lupus Face) and merge it with the current. It represents this blog’s journey and reminds me to move forward, but to never forget the lessons of the past.
  • I’ve had some exciting opportunities come up lately, including training and learning how to be a graphic recorder. I’m hoping to practice my doodling skills here on my blog, creating images like the lovely cartoon @MartinShovel created above, but on aspects of living with a chronic illness. In the meantime, here’s a great article on graphic recording/facilitation in case you want to learn more!
  • I’m also excited to announce that I’ve been asked by New Life Outlook to be a monthly contributor for the lupus portion of their website. New Life Outlook is an online health resource network, chock full of personal stories, medical information, and a chat forum for a variety of illnesses. I’ll link up my November article when its posted, but in the meantime, check out New Life Outlook’s awesome website! 

And lastly, since my busy schedule last month caused me to miss the opportunity of posting during Lupus Awareness Month, I’d like to share some of the lupus awareness materials that have caught my eye over the years. Click on the graphic to link to the original website.

LupusIs_Posters_3

lupus_50290f8a813f3_w1500Lupus_Infographic_FINALlam2012

Till next post, my friends.

Sending you positive vibes for the week ahead!

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5 thoughts on “What is Your “I Have Lupus Elevator Speech?”

  1. Yes! I just posted about this – that “lupus is what I do for a living”, how I don’t always explain it well, and that I’m amazed that I still don’t have the answer down-pat. I did post a link to an awesomely funny video (not mine) that will help though. http://wp.me/p5iKdQ-1N

    • Hi! Nice to meet you! Yes, I totally agree, I can’t believe that after 13 years, I’m still a bumbling fool when I try to answer these questions! Great post – I really like your writing style. I look forward to following your blog and seeing more of your comments here! :)

  2. Hello! My name is Tommie. I’m a Japanese female with lupus. I was diagnosed with lupus in 2000. I’m not open about my lupus. If people are being judgmental, I don’t think I can handle it. I avoid making conversation related to myself. It’s difficult for me to build new relationship. “I’m half-time for health reasons.” It’s a good phrase to start a conversation. I like it ;) If the person is not that close, this phrase is good enough, I think. The closer the relationship is, the deeper the conversation is. When you think of promoting awareness, how about talking about what lupus is instead of what you’ve been through. You are brave and motivated. I’m inspired a lot by your blog. Please keep posted :))

    • Hi, Tommie! Yes, I totally agree, it really depends on the circumstances and who the person is. It also depends on the mood I am in – there are definitely times when engaging in a lupus conversation is the last thing I want to do! We’ve had lupus for the same amount of time – I was diagnosed in 2000 as well. We are lupus anniversary twins! Thank you so much for your kind words and for taking the time to write me. It’s great to connect with you. And yes, I will definitely be posting soon. It’s been very busy lately, but I’m hoping that I’ll have more time in the coming weeks.

      Wishing you wellness,
      Elena

  3. Pingback: Belated Goodbye to 2014 | FACE FORWARD

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