The pursuit of consistent self-care lives in the penthouse of my mind, ever present, most often personified by the wagging finger of guilt and dread. Are you sure you want to eat that? You don’t really think you can handle … Continue reading
First of all, I’d like to send a virtual hug and a warm welcome to Face Forward’s new followers! Connecting with you and reading your supportive and inspiring comments brightened my days during a very busy and tiring month. I’ve been aching to post, but I’ve had to prioritize napping over blogging in the small amounts of free time I’ve had. It’s late and I should be in bed, but I needed to touch base to let you know I’m thinking of you and to give you a quick update on some recent(ish) Face Forward news.
It’s weeks after the fact, but I’m still excited to announce that my first article as a monthly contributor for New Life Outlook is now online! Click here or on the picture below for my take on the importance of support and the healing power of shared experience. How do you create and sustain the right level of support in your life? I’d love to hear your story! My upcoming article touches upon my “lupus elevator speech” post and our personal roles in advocating for lupus awareness. I’ll let you know when the article is posted on the site! In other news, I’ve set up a new email address that is connected to Face Forward’s new domain name. If you would prefer to connect privately instead of commenting on the site, you can contact me at email@example.com. My email will always be visible at the bottom of the homepage and within the “About Elena” page link.
And so, my friends, we’re already half way through January and full speed ahead into 2015. As we move into another year in search of balance and health, I’d like to share a comment that a follower posted two weeks ago:
“… I will remember that even when I cannot go very far, I can always face forward.”
This comment really touched me. It is the message I hope all my readers receive when they visit Face Forward. It’s the sentiment and change in perspective that moved me into a completely different (and much healthier) phase of my lupus life. Thank you for your wise words, Paloma. I may have to make them a permanent fixture on the blog!
And with that, I say good night. As always, I am locked in a battle with my night owl self. She stuck around even after prednisone left, and she doesn’t care how busy or tired I am. It’s a problem that begs to be solved, but for now, I’ll take my losses and end tonight’s battle here and now.
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.
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? 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.
Till next post, my friends.
Sending you positive vibes for the week ahead!