'But you don't look sick? was featured in the patient insights section of our agency pitch for Benlysta in my early insight manager days :). While the presentation is rough, the clients were impressed with our ability to hit the mark in terms of patient insight and the distinction of each age group.

1. DRAFT—For internal discussion only.
VV
But You Don’t Look Sick?
An Online Ethnography Study of Lupus Patients

2. DRAFT—For internal discussion only.
Who is Lupus, anyway?
http://www.youtube.com/watch?v=VttrEK_d2to
http://www.youtube.com/watch?v=VttrEK_d2to

3. DRAFT—For internal discussion only.
Lupus Blogging | “It’s called Lupus, Stupid.”
In one day we found…
■ 60+ Lupus Blogs
■ Written by women and
their spouses, friends,
and supporters
■ To…
■ Explain Lupus
■ Track their Journey
■ Raise Awareness
■ Give/Receive
Support
■ Organize events

4. DRAFT—For internal discussion only.
What does Lupus sound like?| Thoughtbytes
“I hate it when people say, ‘…But you don’t look sick?’”
“A disease that seams transparent to everyone around me”
“I had to be careful not to wake that old Gypsy [Lupus] or she would saddle up her
horses and ride around my body, looking for sites to set up her campfires, watching
them as they flared, burned down and smoldered, before she set off again for another
body organ to destroy.”
(In regards to the famous House line…) “For millions of people around the globe, it *is*
lupus. All day, every day, it's freakin' lupus. Pain, fatigue, even organ failure and
death.”
“My good days and bad days are as emotional as they are physical”
“You need at least one person to speak for you when you can’t speak for yourself. You
need someone to be an advocate for you, that’s the way to make it”

5. DRAFT—For internal discussion only.
Lupus Support | Grassroots Foundation
The reason why this audience ‘aren’t info seeking’ is because
they’re actually the ones creating the content
■ Over 1,000 people on
one Lupus meet up site
alone
■ 14 U.S. cities
■ 6 Countries
■ Over 20,000 memebers
on one Lupus group
alone
■ Over 500 Lupus support
groups On Facebook
■ (Lupus foundation is the
largest)
■ 2,000 Twitter follows for
Cure4Lupus
■ At least 10 other Twitter
sites specifically for
Lupus
■ NY Times Faces of Lupus
■ Patient stories
■ Advocating illness and
providing information to
other Lupus patients

6. DRAFT—For internal discussion only.
321
The Conversation Changes with Age and Lifestyle
The Questioners &
Describers
The Advocates &
Supporters/Leaders
The Reviewers &
Explorers
Early 20’s 30’s 40’s
Diagnosis/Early Management Managing Diagnosis/Doctors
Emotional Rollercoaster
Exploring lifestyle/accepting
self/striving to be at peace with
condition

7. DRAFT—For internal discussion only.
More questions, describing symptoms, and
expressing their journeys
Diagnosis| Early Management
■ Onset by a major life
disruption – Hard to accept
■ Acceptance from others a lot
of scared/devastated discussion
■ Learning the ways to cope
■ While Lupus is diagnosed
earlier, now is the time women
start discussing
 symptoms
 ways to cope
 exploring options
“One of the hardest things to accept was that I
won’t be cured…but it was comforting to know
I didn’t do anything to cause it.”

8. DRAFT—For internal discussion only.
With years of managing Lupus comes
discussing what works and what doesn’t
& exploring new options - Leaders
■ General sentiment is a little
sarcastic, yet sick and tired
■ Depression seems to be a
huge struggle
■ A lot of humor comes out.
Having some years under
their belt, they more
comfortable describing and
dealing, and laughing.
■ A lot of discussion
surrounding infertility
1
Managing Dx| The Emotional Rollercaoster
“I’m tired of being the
redheaded step child of illness!
“I had been blaming my hesitation to start the
drug on the increased risk of cancer. But my
real reluctance was rooted in my refusal to
put aside the desire I had to become pregnant.
It wasn’t the drug I was avoiding; it was the
change to my lifestyle.”
http://despitelupus.com/index.php

9. DRAFT—For internal discussion only.
Exploring lifestyle
Accepting self - Striving to be at peace with condition
■ Acceptance of self
■ Conversation is about living
well, mind, body, and spirit.
■ Feel the need to remind
reader that “It is still day to
day” even after 20+ years
■ More educators /supporters
■ Less discussion surrounding
anger/frustration
Accepting Themselves| Exploring the Lifestyle

10. DRAFT—For internal discussion only.
All Lupus Journeys Carry Similar Motivations
Motivations
Support from
others
Ability to
support
others/
Sharing
Mind/Body/
Spirit
connection
Education
Clearing up
misconceptions
/stigmas
Finding the
right doctor
Sense of
Humor
“Lupies”
Focusing on the day to
day, even moment to
moment, motivations
Because their bodies
can’t be depended
upon, many focus
strength on their
emotional well being
While Lupus is a
Chronic illness all
groups have a sense of
urgency that there
will be a cure

11. DRAFT—For internal discussion only.
Overview of themes
Mindset is key. Whether you are struggling with accepting
you have it, finding the right treatment or doctor, or
dealing with each minute, three-fold support is essential
…And by three-fold I mean:
 Family/friend support
 Doctor support
 Self-support/Emotional well being

12. DRAFT—For internal discussion only.
Sources
■ http://www.fightingfatigue.org/?p=1531'’
■ About.com:� Lupus
■ Alliance for Lupus Research
■ American College of Rheumatology
■ Ardent Cerebrations:� Musings Of A
Lupus Survivor
■ Beating Lupus
■ Blessed Chic
■ But You Don’t Look Sick
■ Chronic Chick Talk
■ Cure 4 Lupus
■ Dancing with Butterflies:� Endless,
Struggling Journey with Lupus
■ Despite Lupus
■ DxLupus.org�
■ Fight Lupus
■ Getting Closer To Myself
■ KidsHealth.org – Life with Lupus
■ Knitting My Way Through
■ Laughing with Mr. Lupus
■ Life Beyond Lupus
■ Life Without Lupus
■ Living Lupie
■ Living With Lupus
■ Living with Lupus – Lupus ‘N Me
■ Living With RA & Lupus
■ London Lupus Centre
■ Looney Lupie Lady
■ Lupus & Humor
■ Lupus 4 You
■ Lupus Alliance of America
■ Lupus Book Online
■ Lupus Canada
■ Lupus Christian Support
■ Lupus Foundation of America
■ Lupus Foundation of America, Illinois
Chapter
■ Lupus Foundation of America – Southeast
Florida Chapter
■ Lupus Foundation of Colorado
■ Lupus Foundation of Mid & Northern New
York
■ Lupus Foundation of New England
■ Lupus Foundation of Northern California
■ Lupus Foundation of Pennsylvania
■ Lupus Girl
■ Lupus International
■ Lupus Living!
■ Lupus Meetup
■ Lupus Mid-Atlantic
■ LUpus Patients Understanding & Support
(LUPUS)
■ Lupus Pie
■ Lupus Ranting
■ Lupus Research Institute
■ Lupus Runner
■ Lupus Survivor
■ Mayo Clinic
■ Medscape Lupus Resource Center
■ Molly’s Fund Fighting Lupus
■ Mommy’s Broken:� Life With Lupus
■ My Lupus Update
■ My Wife Has Lupus
■ On the Road To A Cure
■ Pollyanna.net
■ S.L.E. Lupus Foundation
■ Surviving Lupus
■ The Lady with Lupus
■ The Life Of A 20-Something With Lupus�
■ The Other Side of the Butterfly
■ WebMD Lupus Health Center
■ Welcome to the Wide World of Lupus
■ Women’s Health.gov
■
■ 20’S LUPUS VID -
http://www.youtube.com/watch?v=t8Kci
JLlr7E
■ 30’S LUPUS VID -
http://www.youtube.com/watch?v=5JHn
dYMPpUM&feature=related
■ 40’s LUPUS VID -
http://www.youtube.com/watch?v=ScIuG
176Ejo
■ http://twitter.com/cure4lupus
■ http://www.facebook.com/search/?q=lup
us&init=quick#/group.php?v=wall&viewas
=42201134&ref=search&gid=5497584605
■ http://www.lupus.org/webmodules/weba
rticlesnet/templates/newjersey_home.as
px
■ http://www.youtube.com/watch?v=vpkz
hvZ_CFM&feature=related
■ http://www.youtube.com/watch?v=VttrE
K_d2to
■ http://www.youtube.com/watch?v=ScIuG
176Ejo
■ http://healingdeva.com/lupus.htm

13. DRAFT—For internal discussion only.
Quote bank
■ [Regarding Alternative Treatments] I don’t bother
■ Dealing with life Moment by moment and enjoying life
■ Advice: Ask more questions!
■ A disease that seems [invisible] to everyone around me
■ I’m tired of being the Red headed step child of disease
■ I really wish folks would get up off their asses and find a new treatment
■ I’m not happy I have these problems, but I am glad I have had the opportunity to have a change to make a difference I otherwise
would not have taken
■ Hopefully that is continues to get better
■ The Secret to finding a doctor: find one that’s human!
http://despitelupus.com/index.php
■ There's a difference between being a martyr for Lupus and a glutton – it seems like they are brave, curious, and funny little bunch
that have embraced it. But gosh, sometimes they just want a break.
■ It’s the little things that get them by because there really isn’t anything big to turn to. There is no cure, no champion, or one
treatment.
■ Some Lupus patients put the Fun in disfunction. “Lupies” “Livin Lupie” “Looney Lupie Lady”
■ Lupus body slams you on the ground. You reaction can either be sad, and suffer through your treatment, your flares, and your life –
Or accept and acknowledge and OWN it, the good and the bad. But embrace it like a difference that can bring you together