Chronic or acute disease can change your life overnight…and make you feel as though you’ve lost control of your own body. PatientBloggers find support, information and resources, and regain a sense of control via their blogging. But are there also down sides? Privacy concerns abound. Being identified as just a person with a disease can feel confining. And what if you’re cured or in remission?

Where does your blogging (and more importantly: that close-knit, supportive community you’ve developed) go from there? Share your own stories with us, and find out how to manage it all from Loolwa Khazzoom, who, despite enduring chronic pain, has used dance to help herself and others find joy, Kerri Morrone Sparling, who has successfully battled Type 1 Diabetes since she was six and Jenni Prokopy, who writes about life with Fibromyalgia, Raynaud’s Phenonmenon and GERD. Casey from Moosh in Indy, who has written about working through depression and infertility, moderates this discussion.

Bloggers who write about illness.

J&J guy is here – they have a Health Channel has unbranded video content.

Discussion Points:
+ and – of doing it

Jenny –
diagnosed with multiple illnesses, found tons of sites on the web that were either depressing or too technical

• created chronicbabe
• fulltime writer, had to adapt her schedule, felt responsibility to offer info that she had
• whole poing – be who you are
• Official title of talk is you arent define by your illness
• Has fibromyalgia
• doesnt let herself be defined by illness
• Wants people to keep lifting her up, but helps them in the process
• asks friends to remind her to be her
• most personal most raw posts get the most reaction
• physicians and providers we have all run into crappy ones
• first fibro doc told her to take ibuprofen
• the more we are able to speak out, the more likely we are to build empowering relationships that help

Kerri Morrone Sparling D-Life

• Doesnt let diabetes define her
• Important to remember the whole
• Patient bloggers don’t necessarily mean they are awesome at dealing with it
• Writes for D-Life
• would go to diabetes camp as a kid
• used full name when she first started
• four years later
• blogging about type1
• hired by current company because she wrote about diabetes
• was specific in her posts about living with diabetes devices (where do i wear a pump at the beach), which device manufacturers dont do
• familiarity with condition
• Any potential medical advice there needs to be a disclaimer.

Was at Children with Diabetes conference before and after J&J bought them, and they are still the same (J&J isn’t going overboard – its the same community)

Loolwa Khazzoom (Dancing with Pain)

• Dance as healing methodology
• Jewish Multicultural Educator
• Defined herself in college
• whole life has been freelance
• scheduled life around what she can and cant do – to make it work
• Learned how to take care of herself and heal herself
• her blog is personal, her story, her experience
• writing is her conversation with god/universe/however you want to think about it
• doing it for her
• not on a mission to tell someone what to do or not to do
• 1/2 of americans have chronic pain
• no universities have a workshop on it
• Chronic pain started with years of hell, after car accident
• Injured by docs by not helping or not listening to her indication
• contemplated suicide, saw bleak darkness
• conceptualized dancing with pain as work endeavor
• in alignment with her healing
• blogging, gets article-writes for magazines, attention of docs, positions her as a very powerful patient
• generates respect from docs because they saw her as smart whole accomplished person as opposed to name on the chart
• Chronic pain is a vortex, every morning a choice, put self into a position of not wallowing
  used blogging to pull her up
• physical trauma, emotional distress, and outsiders crazy-making
• didnt blog for a while, felt stuck
• blogging regularly now
• thinks people should be challenging the “law of attraction” stuff in the complementary/alt movement
• Has how-to articles, have handouts, articles to educate you on what you are going thru
• hard to be a “power patient” – huge hierarchy, docs get pissed off when you ask or challenge them
• if you are in a small town, slim pickings, but you have to work at it, have to be safe with that person
  safe emotionally

Casey Moosh in Indy

• Blogging able to share its not always unicorns, rainbows and triplets
• Everyone has Ugly days – and its ok
• Can educate people in what they are going through
• started writing about her move
• then wrote about her depression and overdose
• only one troll comment on the blog
• fertility thing – 4 years – admits what she is going through
• talked about everything in the process, in detail, real and raw
• hard thing to deal with
• talking to folks in Obama admin about what they can do for people in her situation
• challenges around treatment and insurance
• Talking about it will get you places
• Its about her but it helps others

Moderator – was mommyblogger and then started talking about what she was going thru

Chronic Illness COach – its easy to stay in a dark place when first diagnosed, support system so important, treatment plan can help you rebuild, loves helping people,

Comment – Would love it to see more from companies that is closer to reality, would love it if companies were paying more attention and talking back

WHen you feel like you’ve crossed the line

Reed/Rita? (sp?)

• takes off wig
• doesnt have cancer, nothing wrong other than white cells decide she shouldnt have hair
  perfectly fine
• writes about her experience
• first blog post her husband ever read was about her illness
• Something so benign, having no hair, no symptoms, can go to work every day, but having no hair is mindbending
• way that you react to yourself mentally, your life and your illness is your business but you will get the kind of support that you want

Many don’t talk about specific treatments because they dont have responsibility to take care of people.

J&J guy –
great panel
will take insights back to J&J
175 companies
Docs don’t live with it
have to learn to use this to listen and communicate
have to remember there are people at J&J who want to talk

FamilyCenterCare.org – mission to train docs to not be jerks
Dr Licensing orgs – have to start listening to patients

My trip to Seattle this year for Gnomedex was interrupted by mild food poisoning, so I missed all of day 1. The Gnomedex team streams each of the sessions/panels/speakers on UStream which then archive the videos. So between the great experience and incredible conversations in the hallways and mixers, you get to relive or share the best of whats onstage.

Over the last couple of weeks I have been watching the videos of what I missed and recently came across Amanda Koster’s presentation on her project, Salaam Garage. An amazing project, Amanda works with NGOs (non-governmental organizations) inside specific countries to develop projects where traveller/media makers can work with the NGOs to tell real, important stories and share them with their communities and favorite digital spaces (Flickr, Facebook, etc.). I guess you might say it would fall under the “documentary tourism” category of adventure travel. Amanda tells the story of her background, how she came up with the idea and how it is going:

http://www.ustream.tv/recorded/655337

Live video by Ustream

I think this is amazing (both the work, the idea and the kind of work they are doing. Amanda also has a book coming out here:
http://www.bennetthastings.com/author.php?author_id=38

The video is about 40 minutes long, and is the kind of thing you would expect from TED, but we have become used to after years of gnomedex

I am so glad Chris and Ponzi shared this with us (and am TICKED I missed it live).