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?


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!

The Verdict’s In & It’s Oh-So-Good!

This month, the “year of half-time” trial period ended. The verdict?

Livin’ the slow life has been oh-so-good.

And the goodness doesn’t stop with me.  They’d have to confirm it, but I’d say those closest to me are enjoying the fact that less pain, stress, and sickness equals a much more pleasant me.  I have time to do the things I’ve always wanted to do, to nap, to invest in my relationships, and as a result, I have a renewed appreciation and love for what I do in my working life.  I know I’m very lucky to be able to work half-time in a job I love while being able to afford my independence.  This isn’t an option for many people with chronic illness because of familial and financial obligations.  I’m unmarried and have no dependents, no mortgage or debt to pay off.  I don’t like “stuff” and I can live off very little, so having half the income isn’t a big deal to me, but now that this trial year is over I know I have some planning to do.  If I want to keep the oh-so-goodness of the half-time life, I need to have a financial plan to make sure I maximize the earnings I do have.  Maintaining my independence while living the kind of life that will keep me healthy is a tricky combo, but I’m hoping some intelligent planning and creativity will keep me where I want to be.  Oh, and a really good financial advisor.

So, the work hours stay where they are and I move from “testing the water” to “sink or swim.”  The waiting period is over and it’s time to make some long-term plans.  I guess I should say that long-term planning isn’t really my thing. I’m more the “why-plan-more-than-one-year-ahead-if-I’m-just-going-to-get-sick-and-have-to-start-over-again” kind of gal.  That’s worked for the last nine and a half years, but I suppose nowadays we’re aiming for more of a “plan-ahead-so-I-have-the-skills-and-finances-to-deal-with-sickness” attitude.

How do you start making long-term plans after so many years of fearing the disappointment that comes with having your plans ruined by a lupus flare?  How do you make goals when a voice inside you says your life is just a series of temporary windows of health and success?  And as I ask these questions, I see one of my keepers in my head, her chin cupped in her hands and a smile on her face:

“That’s easy, babe.  You just do it.”

Gas Jockey by Night, The Decider by…

Dead of winter.  Cheese grater clouds skip against a black and blue sky.  I can see the moon.  It’s barely 6 o’clock.  I watch the numbers on the digitized gas spewer as I bounce up and down beside my car.  It’s frickin’ cold.  The thing is, I don’t mind, not today.  The prairie wind-chill is lessened by the fact that today ,”Elena The Decider” (previously of the undeciding kind) surprised everyone with a spontaneous bout of deciding after a decidedly dry spell of, well, not deciding.  “Elena The Decider” is a rare species, endangered even, so when she pops her head out of the sand, I am naturally happy to see her.   

Every flare-up is a wake-up call.  This last one was loud and clear – something’s gotta change, baby, or something’s gonna give… and next time it’ll be for good.    

The handle on the gas spout finally clicks and I scurry into the adjacent hut to pay the cashier.  As I approach the plastic partition between us, a blast of hot air from a small heater hits my face.  I smile at the momentary reprieve from the cold and at the fact that Elena The Decider has made her proclamation:  After almost 6 months off work, I will not be going back to work full-time, but will commit to at least a year of half-time work in order to respect my body/mind’s process of healing and to explore passions in my life that I had long forgotten.  

It’s an experiment and for once, it’s a real lifestyle change.

 And now… a cup of steaming hot tea.