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!

5 Tips on How to Bring the Retreat Indoors

We all come to a point where we want nothing more than to wave the white flag, run for the hills, and nap (folded white flag = awesome pillow). Okay, the last part is Elena-specific, but you get the idea. Whether you’re running from work stress or the ups and downs of chronic illness, from time to time, we all need an escape. Fleeing the concrete jungle and freeing yourself out of doors makes sense, but what do you do when you’re stuck in an office or sun sensitivity has turned you into a 10 – 4, vitamin D deprived hermit? Here are 5 tips on how to bring the outdoor retreat indoors:

  1. In my 2010 post, “Me, My Brain, and I,” I discovered that “natural, tranquil scenes caused different brain areas to become `connected´ with one another – indicating that these brain regions were working in sync. However, the non-tranquil motorway scenes disrupted connections within the brain.” Remarkably, a painting or a photograph of a natural scene has the same benefits. My ninth floor office overlooks the heart of downtown, so I’ve set my desktop image to a lush forest pathway. When I take eye strain breaks, I clear my screen of documents and reveal my electronic get-away. Co-workers often linger for a closer look at the warm, rising sun pushing through the shadowy, dense mass of trees. Most walk away mumbling about changing their desktop image. Maybe you should, too!
  2. My desk is in a large room with other co-workers, so I usually have my headphones on to dull the noise and distractions around me. Lately, I’ve been listening to the nature soundscapes on Songza, especially the tropical waves playlist. It drowns out the noise and provides a background of soothing, natural sounds that allows me to focus on the large amounts of editing I do in my job. If you can’t go to the beach, listen to it!
  3. I’ve enjoyed the results of my father’s green thumb both indoors and outdoors my entire life. Because of him, plants are an integral part of my ideal living environment. The fact that I’m a sun sensitive apartment dweller has kept me away from the joys of an outdoor garden, so I’ve cultivated my own indoor version of hanging vines and terrariums, water plants, and other leafy varieties. According to an article by the Daily Mail, hospital patients with potted plants close by said they experienced less pain, anxiety and tiredness, while houses with plant-filled rooms contain between 50 and 60 per cent fewer bacteria than other rooms without plants. Have a murderous history with our green friends? Check out this link on 22 hard to kill houseplants. While you’re at it, add a few potted pals on your desk at work. Plants not only decrease stress and detoxify the air, they also increase productivity and creativity!

    Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad's fabulous indoor garden in the background.

    Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad’s fabulous indoor garden in the background.

  4. Take your laptop or book and grab a spot in a coffee shop with a view, or somewhere with lots of indoor greenery like a conservatory. You’ll get “out” for a good dose of natural world goodness while getting a break from that sun-sensitive hermit suit.
  5. Think inside the box when getting together with friends during peak sun hours. Recently, on a particularly hot and sunny day, I had a picnic lunch with a friend in her closed in front porch. Don’t have one? Pick a room in your home with the best natural view, roll out a blanket, and enjoy! Take a scenic drive to a tea house out of the city or for the parents out there, set a playdate and head to an indoor pool, water park, or aquarium.

A nature retreat from the stress and challenges of our lives can be hard to do, especially for those of us living fast, urban lives. Trying to avoid an ever present burning ball in the sky at the same time is even more difficult. If you can’t have it all, be creative and have a small piece!

In other news, I’ve added a new “About Elena” page to the blog! I’ve wanted to create one for a while now, so I’m happy to be able to give my readers a condensed timeline of my lupus experiences along with a few fun, fast facts about who I am beyond my lupus journey. Check it out on the top menu bar of my home page or click here. Feel free to visit this page anytime to post any questions or just to say hi. I’d love to hear from you!

 

Quick Nutritional Fixes for the Kitchen Weary

When there’s an increase in stressful events, it’s easy to find yourself on the edge of a health neglect catastrophe. When I feel the threat of stress coming on and my energy dwindling, meal planning and grocery shopping fall to the wayside. For a quick nutritional fix with minimal prep, I usually turn to one of these easy options:

  • Can of tuna or hummus or goat cheese with rice crackers
  • Rice cake with almond butter and banana (or avocado)
  • Miso soup (all you need is boiling water, miso paste, green onion, and tofu)
  • Green smoothies (great for breakfast or with a light meal)
  • Baked, whole sweet potato or sweet potato fries
  • Boiled eggs or veggie and goat cheese omelettes
  • Rice cooker recipes (throw brown rice, veggies, and seasoning into the rice cooker and voila!)
  • Veggie pizza with goat cheese on a rice wrap
  • Lots of fruits, veggies, seeds and nuts as sides or snacks (no prep required!)

I’ve been feasting on these fast foods quite a bit lately, slowly inching myself towards my cookbooks and grocery lists. As I leisurely complete that journey, I will leave you with a quote from my yin yoga instructor: “Discomfort allows for growth.” I suppose the challenge of finding and sustaining health is very much like holding an excruciatingly long yin yoga pose – you breathe, you modify, and you don’t give up.

E’s Wellness Emergency Kit

We all have things that we automatically do when we are sick or feeling low, a kind of “wellness emergency kit” full of tools like your favourite CD, a hot compress, that favourite pair of pyjamas, or the classic, homemade bowl of soup.  What do you prescribe when you’re forced to nurse yourself?

Here are some of the tools in my wellness emergency kit:

Hot showers:  A quick, hot shower loosens up my body and soothes any inflammation I am feeling. Afterwards, I feel fresh and more ready to deal with the physical pain and stress I am experiencing.

Naps:  Napping has always been an integral part of how I manage lupus.  I always try napping first before taking any additional pain medication like tylenol.  Although, I always say that I have “sleeps” rather than naps.  It’s nearly impossible for me to nap less than two hours!

A steaming cup of decaffeinated tea: My top and most frequent choices are ginger, peppermint, lemon balm, and indian spice.

Steamed plantains: For as long as I can remember, my mom has cooked plantains for our family, mostly in the pan fried form with a sprinkle of brown sugar. When I was experimenting with nutrition and trying to cut out sugar, she encouraged me to steam them. They are healthy, naturally sweet, warm, filling, and my ultimate comfort food when I’m feeling sick and secretly wanting someone to take care of me. It’s as if my mom is in the kitchen making them for me!

Watching an episode of The Daily Show: I tend to watch Jon Stewart online (I don’t have a TV) at the end of a long day or when I am feeling sick because I know I’m guaranteed a laugh out loud moment.  No matter what has happened or how I am feeling, ending the day with laughter puts things in perspective.

Fuzzy socks and fuzzy blankets: Making sure I’m warm is always a top priority when I’m feeling sick.  My sock drawer is overflowing with thick and fuzzy socks and I have several blankets in my apartment aside from those on my bed. I’ve also been known to sit in front of my little heater, as well!

Candles: Creating a peaceful, quiet atmosphere when I am dealing with pain (physical or otherwise) is important to me.  Softening the lighting in a room calms and helps me focus on getting through the sensations I’m feeling.

An epic fantasy novel:  In the past, escaping into a really good novel has really helped me in the recovery process. Recently, I’ve fallen in love with fantasy authors like Guy Gavriel Kay and George R. R. Martin, but any great piece of writing will do the trick. The short opportunities to let go of my story/present moment and lose myself in someone else’s helped ensure that I wasn’t swallowed up by the fear, stress, and pressure that come with the recovery process.  I found that when I did come back to my story, I felt less overwhelmed and more ready to face my circumstances and move forward.

A little help from my friends:  When I am feeling really sick, I tend to want to be alone, but I’ve tried to teach myself that it’s okay to call a friend or take a quick drive to be with family.  It’s hard to ask for help and not feel dependent or incompetent, but it’s important to remind yourself that sometimes the healing is in the company you keep.