The Need for Expansion

This blog is overdue for a lupie confessional, so here’s a peep into my most recent stumble into a lupus mental trap:

Last night, I changed my twitter handle from the name of this blog (@_face_forward) to @ElenaAnciro because living with lupus is just part of my story. I was in need of that reminder, of the room to expand beyond the deficiencies in my blood, the ever present defiance of my body. I’m proudly shaped by it, but I struggle not to be defined by it… especially last night, for no particular reason at all. Because that’s what happens when you have a chronic illness, it makes you question who you are, or more so, who you could’ve been without it. It’s a silly social media switch up, but it makes me feel less compact. The name change is a statement: There’s more to me than that.

worlds-most-creative-statues-6

(image source)

 

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_w1500lam2012

Till next post, my friends.

Sending you positive vibes for the week ahead!

An Unexpected Honour

Earlier this week, I was notified that Face Forward received nominations for two WEGO Health Activist Blog Award categories: Best Kept Secret and Best in Show. I’m feeling incredibly honoured and grateful to be counted amongst such passionate and inspiring health advocates!


As my long-time readers and newfound followers, I hope you will consider supporting Face Forward by taking a moment to vote.  Click on the WEGO Health Activist Award image on the sidebar, or click here to be directed to my profile link. They allow you to vote twice, once for each of the categories I am nominated for. They don’t allow you to vote for both at the same time, so you will have to click the endorsement button again to vote for the second category. I also encourage you to nominate a health activist in your life and to check out the rest of the nominees and their respective causes. It’s amazing to see so many people advocating for, and creating positive change in patient care and support!

One of the things I love about the WHAAs is that the contest isn’t driven by popularity alone. The top 3 nominees with the most endorsements (votes) in each category will automatically become finalists, but the remaining finalists will be determined by other factors. A nominee’s blog/social media follower count isn’t considered in the judging process either, which gives lesser known blogs a fighting chance. Becoming a finalist would be exciting, but my real hope is that my nomination will create more visibility for the site, so I can connect with more people. As I said in my last post, I really want to increase FF’s reader-driven content and this could be a great way to do it!

Coming up next on Face Forward, I’ll be posting my thoughts on public awareness campaigns, inspired by the recent ALS Ice Bucket Challenge criticisms and the commencement  of Lupus Awareness Month. My first of what I hope to be a series of reader suggested posts will make its debut as well! Oh, and be sure to check out the newly posted “FF Quote of the Moment” on the side bar. It’s one of my all-time favourite proverbs that has, at particularly troubling and difficult junctures of my life, given me focus and perspective.

So in closing, I want to send out a big thank you to WEGO Health for all they do for health advocacy and to you, my readers, for all your support!

FACE FORWARD’s 5th Birthday: Elena’s List of Favourite Posts

The last month has been chock full of milestones: 13 years since my official diagnosis with Lupus, 5 years since my Lupus Cerebritis flare-up, and just last week, the 5th birthday of Face Forward’s strange and unexpected emergence into the blogosphere. To celebrate, I’ve compiled a list of my favourite posts from each of the last five years:

  1. 2009 – 2010: Where There is Tea, There is Hope and Goodbye Evil P – Yes, I’ve broken the rules already, but considering the first year of this blog has the most posts, I thought it merited two picks instead of one. My earliest posts are arguably the most intriguing in light of how my brain inflammation affected the content, but neither of my choices were written during the height of my manic episodes. “Where There is Tea…” is probably my favourite post of all-time. I fell in love with neuroscience in this post, a strong fascination that has stayed with me to this day. It is a reflection on tea, mindfulness, positive psychology, and brain power, but more importantly, it the first time I express a sense of hope and empowerment when it comes to my health.  “Goodbye Evil P” marked the beginning of the end of taking Prednisone, something my long-time readers will know as a huge turning point in my physical and emotional recovery.
  2. 2010 – 2011: Face-Off: A New Name for a New Game – As my brain and body healed, the clarity of mind spurred a huge transition in the look and direction of the blog from an inward, hyper-personal focus, to one of reflection, but with more of an outward focus. I had finally escaped the confines of my mind and was determined to re-enter the world and my life. The dark and brooding theme of “Lupus Face: One in a Sea of a Thousand” was stripped away and the lighter, horizon-focused Face Forward was born.
    cropped-n516163703_363347_45568.jpg

    Original blog header graphic for “Lupus Face: One in a Sea of a Thousand” (as of Sept. 2009)

    Blog header graphic for "Face Forward: Finding Life in Lupus"

    New blog header graphic for “Face Forward: Finding Life in Lupus” (as of July 2010)

  3. 2011 – 2012: E’s Wellness Emergency Kit – The third year, I was immersed in re-engaging with movement through running and my Dance Diaries: Awkward Adventures in an UnCooperative Body series, teaching myself to heal my body with food through my Cooking for the Wolf posts, and starting to share my “Lupus taming” tips and tricks. This post lists the small comforts that have helped me through the Lupie cycles of fatigue and pain.
  4. 2012 – 2013: The Chance Encounter – During the fourth year, I was focused on setting health goals and the role that stepping outside of your comfort zone and creating new experiences for yourself (ie. varying degrees of epic adventure) can have on overall wellness. In this post, a stranger in a hot spring teaches me lessons in resilience and reveals the surprising conclusions one can only discover when traveling alone.
  5. 2013 – 2014: Redefining the Mission to Remission – The fifth year, I was very reflective and conscious of how the last few years have changed the trajectory of my life and the way I perceive my disease and my future. This post examines the evolution of my “mission to remission” and the merits of quiet victory.

I hope you enjoy visiting my favourite ghosts of Face Forward past. Comment below to share your favourite post with me, as well as your suggestions on what you would like to see in Year 6. I have some big plans in the works, including an exciting monthly feature by a guest blogger who will provide the unique insights of a medical professional with a personal connection to Lupus. I plan on strengthening my commitment to providing relevant, useful info combined with descriptive storytelling, improve the ease of navigation on the site, and begin to bring in other perspectives and tips on wellness that may not be Lupus specific, but still apply to our goal of sustained health. I also want Year 6 to bring the caregiver’s voice to the forefront, because really, where would any of us be without them? And lastly, be sure to check out my new “Blog Philosophy” page on the top bar menu or click on the image below to read about what I hope to accomplish in the Face Forward future. blogphilosphylink.jpg-2 So, happy belated fifth birthday, dear blog! You’ve remained one of my only constants in a time of great change and uncertainty. We’ve had a tumultuous relationship, you and I, but I think we’re at a point where we can say that we’re in it for the long haul. Year 6, here we come!