DRAFT—For internal discussion only.

VV

But You Don’t Look Sick?

An Online Ethnography Study of Lupus Patients

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

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

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”

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

DRAFT—For internal discussion only.

3 2 1

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

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.”

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

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

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

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

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=t8KciJLlr7E

■ 30’S LUPUS VID - http://www.youtube.com/watch?v=5JHndYMPpUM&feature=related

■ 40’s LUPUS VID - http://www.youtube.com/watch?v=ScIuG176Ejo

■ 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/webarticlesnet/templates/newjersey_home.aspx

■ http://www.youtube.com/watch?v=vpkzhvZ_CFM&feature=related

■ http://www.youtube.com/watch?v=VttrEK_d2to

■ http://www.youtube.com/watch?v=ScIuG176Ejo

■ http://healingdeva.com/lupus.htm

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