What is Your “I Have Lupus” Elevator Speech? (Part 2)

With the holidays just around the corner, I thought I would re-visit a post I wrote two years ago on the awkward perils of party small talk. To my delight, it was re-blogged with my permission by MyLupusTeam and received many thoughtful and insightful comments. Before I share some of my favourites with you, let’s hit rewind, shall we?

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Written in Nov 2014:

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 saying too much.

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?

And this is how our lupus family responded:

I don’t normally give any info other than “I have some major health problems”. Of course, since they see no blood oozing from me, they assume I’m lazy and working the system.

With my personal experience, I have a tendency to go with overshare. I have found that being more honest and open has allowed me to make deeper and more personal connections with others. At some point, you have to decide what you are comfortable with.

My speech is no speech honestly. I say the old stand by – I am just not feeling well. I have tried explaining this disease to others and it has fallen on deaf ears I am afraid.

I say “I’m living with lupus not dying from it.”

I honestly feel guilty for having to mention it. I try not to but when I do I feel like I have done something wrong by being ill. I think it is from the many years of only knowing I was ill and not knowing WHY and having to tell people “well they are working on figuring it out” and then eventually losing friends and those close to me because they assumed I was making it up and told me as much. I honestly try to hide it as much as possible.

I think your answer “For Health Reasons” is perfect. If they ask more then you should do the elevator speech but I don’t tell everyone I have lupus. Most people don’t understand it and at times I don’t either. When you tell them about the extreme fatigue, they reply they get that too. It’s such a complicated thing to explain that I just prefer not to.

My speech depends on how much someone irritates me. If the remarks are really rude and ignorant I get on my ‘soap box’. The world needs to be educated.

I rarely tell people that I have Lupus. I think its because people rarely believe that there’s truly something wrong with me. I get that judgemental look that it’s probably all in my head. Most people know that I’m ill, especially family. But, I usually don’t mention it.

I don’t really care if someone knows I have lupus. Many people don’t know what lupus is or what is does to our bodies. I really believe that we need to have acceptance of it. Lupus is a part of us whether we like or not. If we spread the word, then more people will know and will understand.

Short and sweet. People ask out of curiosity, or other reasons, not to hear the whole sordid story. When people ask me more questions I tell them to Google it! Also, keep in mind that it’s only your responsibility to provide an answer, it’s not your responsibility how they handle it.

I also prefer not to reveal anything, especially in a work situation unless I absolutely need to. In that case, I’ll just mention that I’m sick and they don’t ask too many questions.

Where I find it can be more challenging is with friends. I can’t drink alcohol due to one of the medicines I’m taking, so often it’s the question “Why aren’t you drinking? Are you pregnant?” which I’ve tried to cover up by saying “I don’t really drink except for special occasions.” People tend to leave me alone after that but it’s still an uncomfortable conversation.

My general rule of thumb is go with your gut feeling. Sometimes the energy you spend on those brief moments don’t make a difference and exhaust you, take time to put effort and thought into those that you have time for and will.

I love that this post resonated with so many people and I am grateful that so many chose to share their thoughts with me. The comments above are only 13 out of over 100 responses!

These days, I am working full-time for the first time in 8 years (I’m shocked, too, trust me), so when I applied for the job three months ago, I wanted to face the “lupus reveal” head on. My partner encouraged me to list this blog as an example of community leadership and volunteer experience. Yes, you read that correctly – I put my “I have lupus” elevator speech into my resume. Ballsy, right? To be honest, the moment I hit send, I was terrified I made a serious mistake.

It never came up in the interview, but it made me feel good that it was out in the open right from the start. It was a way for me to inform a potential employer while framing it in a positive, empowering way. As for how I am handling this huge work/life transition, I’ll save that for another post!

How about you? Have you developed a “I Have Lupus” elevator speech strategy that you would like to share? Comment below or tweet me!

Face Forward Spotlight: Ruby Castilho

The formula is simple:

Ask an incredible individual that I’ve met through my blog to answer six questions.

Featuring “Fabulupus” co-author,  Jessica Kundapur was an amazing way to launch the Face Forward Spotlight series and I’m equally excited to introduce awesome human #2 – RUBY CASTILHO:

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Ruby, who lives in the UK, was diagnosed with lupus at the young age of 16. Ruby reached out to me in 2015, the year her desire to create awareness and support for others led to the birth of her blog, positivelylupus.

Two years later, Ruby has gone from birthing a blog to expecting her first child! She will be blogging about her pregnancy, aiming to:

“sugar coat as little as possible and just tell you all the truth, as it happens.”

I know there are many women with lupus who will benefit from her insights as she experiences the challenges and joys of the months ahead. For those of you who are meeting her for the first time, let’s put her under the Face Forward Spotlight and get to know her better:

How would your closest friends describe you?

My friends would probably describe me as a quirky, happy go lucky character who looks on the bright side and is happy to help with what I can.

If you could go back in time and speak to your past self right after your lupus diagnosis, what advice would you give yourself?

The only advice I can think of is to make myself more aware of what lupus actually is, as it wasn’t until probably 2 years or more after my diagnosis that I started to understand my condition and body properly.

What is the most important thing you think a caregiver/partner of someone with lupus should know?

A partner of someone with Lupus should first of all know that they are awesome for sticking by them, but also not to be upset or disheartened when there is nothing much they can do to help with the pain. But that by being there by our sides is more than we could ask for. If your partner is stubborn and ditsy like me, the best thing you can help with is helping to spot any changes to their behavior/actions/physical appearance as we may not realise small changes ourselves, however they may be a big clue as to what’s about to come.

The mental and emotional struggles that come with lupus can be as challenging as the physical. Who/what helps you face forward when you’re feeling bogged down by the mental and emotional strain of having lupus?

One thing that helps me is my cats, they never fail to cheer me up. I feel like pets can read your emotions, and also they are just so silly and cute it can’t be helped but to lift your spirits! I think the best thing is just to find something you really enjoy, whether it be playing with your pets, visiting a special location, cooking, etc to help you de-stress.

What is one positive thing that has come out of your lupus journey?

One positive outcome of having lupus is that I have really learned to understand myself and my body, what my body needs and what is best for me. Of course I am still learning, but I feel that I wouldn’t be who I am, as confident as I am about myself if it wasn’t for lupus. I’ve learned to care more about myself, and to cherish the things that actually matter most. Because of this I can be more rash when making decisions and not be too concerned about what other people will think about my decisions, as long as I know that it is what’s best for myself.

Face Forward is described as a meeting place on the journey towards balance, health, and epic adventure. Share something adventurous that you’ve always wanted to do.

One thing I have always wanted to do is to go sky diving, in a beautiful place like Dubai. I love travelling the world and seeing different cities, cultures and cuisines. Seeing all of this from above I think would be incredible!

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I love that we were able to connect despite thousands of miles (and an ocean) between us! Thank you, Ruby, for having the courage to share your story. You can follow Ruby’s journey through her blog, postivelylupus.

Would you like to be featured in Face Forward’s Spotlight series? 

Email: elena@lupusfaceforward.com

Monday Inspiration & Good News!

Need some serious inspirational Monday vibes? Check out Shanelle Gabriel’s video below! I LOVE what this fellow lupus warrior has to say about fear and the unexpected freedom her diagnosis gave her.

I also have an exciting update – Face Forward has been nominated for a WEGO Health Award! Two years ago, FF was nominated for Best Kept Secret and Best in Show. This year, FF has another Best in Show nomination. I have no idea who nominated me – whoever you are – THANK YOU! I am honoured to be considered a “patient leader” and to be counted among so many inspirational individuals who are making a difference in the lives of those with a physical and/or mental illness. Congrats to all the other nominees!

 

Google Searching Through a Lupus Lens: NLO Chrome Browser Extension Review

Happy Friday, blog fam!

Over almost 8 years of blogging, it’s been exciting to see more online support networks and resources for people living with lupus. That being said, the web can feel like an information jungle, draining and time-consuming to navigate, especially when you’re trying to conserve energy during a flare. What if there was a way to get the lupus-related info you want, all in one place, with little effort?

In early June, New Life Outlook will be launching their new Google Chrome browser extension. As a member of their NLO – Lupus writing team, I was given a special preview, which I will be sharing with you today!

So, what is a browser extension, you ask? Browser extensions extend a web browser with additional features, modify web pages, and integrate a browser with other services. If you’re a visual person like me, your first reaction to reading that was probably, “say what??” Don’t worry, I took screen shots!

New Life Outlook provides support for a spectrum of conditions, so when you set up the extension, you can choose the type of information you want to see featured on your browser page.

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You can also choose specific health news providers:

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When you are done the initial set up, your Google Chrome home page will look like this:

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The home page includes the time, date, temperature and the latest New Life Outlook article recommendation, which happens to be my latest article on lupus stigma!

The left side column is your navigation panel for your browser. When you click the “nlo” circle, it slides open the health news panel:

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You have three tabs to explore: News, articles, and inspiration. You can also “favourite” any articles you want to save for later, change your background pic, etc.

Visually, I think it looks great – it’s simple and clean with lots of personalization options. Right now, they don’t give the option of uploading your own background pic, which I think would be a desirable add-on. I also think it would be great to add blogger posts as a newsfeed tab on their news panel.

That being said, I love what NLO is trying to do with the development of this browser extension! What are your first impressions? Would you try it?

If you are curious, check the chrome web store and NLO’s step-by-step instructional video on how to set up the extension!