OBESITY ONLINE FORUM CONFERENCE REVIEW (Or, how to not make any powerful friends)

This past weekend, I was an invited guest at the New York City for the Obesity Online event sponsored by Ethicon Endo-Surgery and the Obesity Action Coalition.  Much has already been written about this from some of the other WLS peeps who were in attendance.  I've personally held off on speaking publicly for a few days because I wanted to formulate my thoughts after sleeping on it, and reading the other comments and blog postings about it.

The problem is, I had an almost entirely opposite reaction to the conference than most of the attendees, and I'm still trying to sort out why.  All of the conference attendees very generously(?) had their travel expenses paid for and were put up in the swanky Mondrian Soho hotel.  Unfortunately, I slept through the first night of meeting and greeting, which I was told was lavish and had an open bar (open bar?!?  damn my post-plane sleeping!). There was a lot of mingling and setting the tone for the "let's all get along and work together."  I can't comment on that since I was snoozing away in my bed as everyone else shmoozed.  (Note:  I'm an insomniac and barely sleep - unless, of course, I *should* be awake at something important like, meeting your peers for the first time.  Doh!)

I'm not going to lie:  free trip?  Count me in.  If you're paying, I'm going.  BUT.  Does that mean that I'm obligated to write a entirely positive review?  I hope not, because that's not what I'm about to do...

When I arrived at the official forum on Friday, I was alone and full of anxiety.  Even though 90% of my life is made available for public consumption, one of the things I don't often speak about is my daily struggle with anxiety and panic.  It's overwhelming.  I can get up on a stage half-naked in a corset and sing my heart out, but to walk into a room and meet my peers is almost debilitating for me.  It's something I struggle with on a daily basis, and I literally have to FORCE myself out of the house at times.  It's frustrating because I logically and rationally know that I'm safe, but my body, brain, and heart still go straight to panic mode.  So for me, walking into that room was incredibly difficult.  But do you know what helped?  Lynnda, Toni, and Mike from bariatrictv.com walked right over to me, gave me a giant hug, and welcomed me sitting with them in their row.  Then Jill and Teresa did the same.  (My huge thanks to everyone for being so friendly and welcoming!) My nervous were calmed, especially once I had a mouth full of bacon.  (Yes, bacon.)  Flying in on the same plane as Melting Mama helped as well. Especially as she laughed at me while I was searched by TSA.

Once I calmed down, I was able to start taking in what was going on around me.  Clearly, everyone there was there for the same purpose:  to discuss obesity, treatments, education, and resources.  We all have a common purpose, a common desire to bring to light the challenges of morbid obesity.  But I was confused:  who was running this event?  The Obesity Action Coalition was front and center, with Endo-Ethicon and Porter-Novelli also there:

• Endo-Ethicon is a subsidiary of Johnson & Johnson, and creators of the Realize Solution
• The WLSFA was not invited to this event. I'm not sure that anyone on the organizational side actually knew of my affiliation.  (The invitation was sent to me through my radio program).
• One thing was clear:  a LOT of money was spent on this event.  More than I probably make in three year's time.  I understand the concept of spend money to make money, but it felt almost obscene to me.  Maybe it's an unfair assessment, but as someone who works pretty tirelessly as an unpaid advocate for weight loss surgery, obesity awareness, and positive self-image, I felt guilty.  I felt guilty that my soon-to-be-husband is working 10 hours a day plus going to school and that we struggle on a daily basis to put food on the table and keep our bills paid. And yet?  He supports me, my volunteer work,  and my passions 100%.  

But how could I enjoy this lavish treatment?  I knew I was being courted, we all were.  But here's the thing:  my voice - our voice - is valuable.  I realized this immediately when I looked around at the swanky hotel room, the lovely and delicious meals, and heard about the free open bar.  It just seemed: obscene.  I couldn't help but think, "if you're going to spend this much money on me to get me to support your cause (our cause), why not skip the royal treatment and buy some ad space on my blog?  Or my radio program?  Or my website? Why not help me help you?  If we're working towards the same goal, and you clearly know the value of my websites, radio program, and social network, why not skip the fancy trip and work with me in a way that helps us all move forward?  And most importantly, why is the WLSFA not invited?  Of course, *I* accepted the trip, so I'm probably partially to blame for my own discomfort with the situation.  (Truth be told, I almost didn't go, but that was because I was scared to go, and I'm trying with all my might to not let fear rule my life.)

But beyond that, I found some of the content upsetting.  Let me be clear:  I am going off of my memory here.  I have asked to see or hear a transcript of the day to confirm my memory (which admittedly can be faulty at times), but no one has been able to provide that for me.  I will mention that Joe Nadglowski (President/CEO of the Obesity Action Coalition) has been incredibly helpful and communicative in answering my questions.

The first thing that triggered a red flag for me is when patients were referred to as "consumers."  I took serious issue with that as I looked around at all the expenses around me.  Patients are not the same thing as consumers, and to refer to them as such is upsetting.  It made me feel as though the conference was a bit disingenuous.  It was clear there was a huge advertising campaign going on here, but the mission behind it was now starting to get a bit murky.  

The next thing that troubled me:  a response to the lovely Teresa Dunn when she asked about Food Addiction.  If my memory serves me correctly, I believe that Dr. Blackstone's answer was that there IS no such thing as food addition.    Part of me agrees with that, but only because I don't think addiction needs to be qualified.  I think addiction is addiction. It is compulsive, reactive behavior - something I've also struggled with my entire life.  Her response upset me, because I think it's a common thought process in the weight loss surgery medical community.  I had no idea how much I would struggle with this post-surgery, and how the compulsive behavior was transferred from food to pills to wine and then back to food.  I almost felt a bit ashamed when she spoke.  What is wrong with me?  Then I was enraged, because this is too often swept under the rug and NOT talked about.  And I know, I'm absolutely sure, that I am NOT the only person who struggles with this.  Dealing with addictive behavior HAS to be discussed more often, it HAS to be brought to the forefront in order for any post-op to be successful.  I'm not a medical professional, true, but I am someone who lives this daily. (Important to note:  Dr. Blackstone's statements were her own, and not necessarily the view of the OAC.)

I also knew that at some point, the Realize Solution was going to be discussed and it was...but in a very subtle way.  We were told about Tracy, a mom of four with a mission to lose weight.  They didn't mention that she was partnered with the Realize Solution (thank you for the correction, Andrea!), only that was should support her in her journey. I'm happy to support anyone in their mission for a healthy life, but not happy to be an unpaid part of Endo-Ethicon's/Realize promotional campaign.  

All of this being said, I did walk away with a lot of positive as well.  First, it was wonderful meeting many of my online friends and peers for the first time.  Despite my panic and anxiety, it was incredible putting online names and faces to real people.  The Obesity Online event provided an avenue for us to all meet where we may not have otherwise had the opportunity.  That alone is worth mentioning because it only serves to help us become stronger in our united goals.

A highlight for me during the conference was meeting Colleen Cook.  When I was first researching weight loss surgery, hers were some of the first books that I read and the information I found in them helped me make a more educated decision.  Her "Success Habits of WLS Patients" should be required reading for anyone going through the weight loss surgery journey.

I was also reminded of the many, many wonderful things that the Obesity Action Coalition is doing. They are constantly advocating for the obese, bringing to light many issues in the news and working on the behalf of the patients.  Their website provides a plethora of information, resources, educational tools and support.  I am a member, and do highly encourage others to be as well:
 

www.obesityaction.org

I met many wonderful people as well, and I will steal Beth's list of bloggers and WLS peeps:

• Diva Taunia http://www.divatauniablog.com/
• Melting  http://www.meltingmama.net
• Andrea Ullberg http://www.wlsvitagarten.com
• Kaitlin Nelson http://www.thebypassedlife.com
• Michelle Vicari http://www.theworldaccordingtoeggface.com
• Dave Fouts http://www.chefdave.org
• Teresa Dunn http://teresajourneyshome.wordpress.com/
• Jill Harris http://jellosjourney.blogspot.com/
• Michelle Schiener http://vsgmom.com/
• Toni Towe  http://www.bariatrictv.com
• Michael Towe  http://www.bariatrictv.com
• Lynnda Shepherd http://www.bariatrictv.com
• Susan Maria Leach http://bariatriceating.com/SMblog/
• Barbara Thompson  http://www.wlscenter.com/
• Rachel Lebowitz http://bariatricrevisionary.blogspot.com/
• Colleen Cook http://colleencook.com/
• Cari DeLaCruz  http://www.bariatricafterlife.com/
• Yvonne McCarthy  http://www.bariatricgirl.com/
• Emily Gomez  http://weightlosthopegained.wordpress.com/
• Laura Preston  http://mydailydetour.typepad.com/
• Maria Fitzpatrick  http://www.formerlyfluffy.com/

(Please let me know if I am missing anyone!)
 

I'm well aware of what a delicate balancing act it is to promote vs. advocate.   For me as a one-Diva operation, I struggle with that at times.  My issues stem from the feeling of being taken advantage of by a large and powerful company with lots of financial backing, and unfortunately, that was the bad taste that was left in my mouth. I don't want to take anything away from the powerful advocacy that can happen when a group like this comes together, but I also don't want to feel duped.  I will work tirelessly for a cause I believe in, but for the cause, not the company.  My voice is valuable, and so is that of my peers.  This, I know.

Comments

[McNee]

Taunia... you are great for all that you do on the advocacy front, but it sounds like you knew who was behind this going in to it? I didn't know who it was and because of that missed my chance to be there.

Once I did find out, the first question I had was "what's the catch?".

I'm not trying to take away anything from all that you do, but maybe this is your opportunity to open some doors with a company like this. Work with them to see if you can get them on track with some of the things you are looking to accomplish?

Overall, I'm glad to see that you do have reservations, even if it leads to something great in the future for the OAC or WLSFA or WLS patients in general, the support needs to go both ways and should never be given blindly.

[Diva Taunia]

I definitely think that guilt is part of my problem with all of this. True, I did know who it was going into it, but the topic was quite vague. In fairness, I had emailed them originally and asked them *what* was the conference about, because it wasn't entirely clear to me. (I wasn't sure if I was being asked to go to speak, or just be there - it was never really made clear). That was never directly addressed, and I'm not going to lie: it's hard to pass up a free trip, and now I feel...guilty.

I walked away with both positive and negatives. I just can't lie. Lots of people asked me what my take was, and this is it.

[McNee]

Yea, I can understand that... definitely. But like I said, maybe there's still a way to turn this in to an beneficial opportunity for all sides.

[Diva Taunia]

I absolutely, 100% welcome the opportunity to have my mind changed. :)

[Kaitlin]

Oh, I still have more coming on my thoughts about the event. I started off with the positive, but I do have more to say. Like you, I'm giving myself some time to mull it over.

[Andrea Ullberg]

FYI the "Heart on my Sleeve" is a VSG, not a band.

[Diva Taunia]

DOH! Way to fact check....*embarassed.*

[Dagny]

If you're the VP of PUBLIC RELATIONS for the WLSFA then it sounds like you should have been buddyin' up to the Porter Novelli peeps to get them to arrange just as lavish an event for your group.

[Diva Taunia]

Dagny - I don't want a lavish event for us. I want people who desperately need the surgery to get it.

[Dagny]

And to accomplish that goal Taunia, you play the corporate game the way killer shark PR people do.

[Diva Taunia]

I politely disagree. I will never be a killer anything, but I DO get stuff done. And obviously enough to get me an invite. And discussion happening. :)

[Melting Mama]

@Taunia - I know I rambled on Facebook, but it's true. It really is all about business. I am glad that you're getting this conversation out there.

[Patrina]

Hi Taunia,
I understand living on the financial edge, and, in my opinion, I think it sometimes makes us hyper-sensitive to the abundance of others. These people are used to moving in lavish circles, and think that it's the only way to draw people to the meeting and hopefully garner support. I know this, as I have sat on many a provincial committee and asked to speak on the subject of the needs of childcare in rural communities. I would walk into the meetings in these gorgeous hotels, lavish buffets and wonder how this money could have supported some of the projects we were trying to accomplish. What I learned is that, if you want to have a voice, sometimes you gotta sleep with the associate. I know the term is usually enemy, but as we are all playing for the same team, that is not the case. They ARE listening, they just operate on a different plane than we do. They DO want our feedback and questions, even though they also have their own agenda. I think our role is to be the itch they need to scratch. So, also in my opinion, your guilt is a waste of your valuable energy. Just be the flea on the back of the thoroughbred and keep biting baby! Love, Patrina

[Teresa Dunn]

Taunia, I do want to add here, it wasn't me who Dr. Blackstone said that to. She was talking to the person before me, then I spoke as a post op who has delt with addictions..

Love ya honey,

T

[Diva Taunia]

See? Memory. Faulty. :)

[Teresa Dunn]

Nahhh, you are a doll.. I was so happy to finally meet you and give you a hug...

[Melting Mama]

Who said fleas? *scratch* I am interested to see if anyone ELSE who was there chimes in.

[Mike]

Excellent write up on the event Diva. First let me say that I am glad that the BTV crew could help make you feel at ease with hugs. Spread the love! That’s what we do.

I too was a bit confused as to why we were there but here are my thoughts…

First I have to say it was nice to get back in touch with the OAC folks. I learned about quite a few resources that they had that I was unaware of. They were also open to hearing what our needs were and seemed genuinely interested in helping out with expert advice when needed, we will definitely take them up on the offer in the future.

As for Ethicon Endo Surgery, I think we were there to be informed of what their messaging is to “consumers” in hopes that we would fall in line with that messaging, then in turn disseminate it to our audience. I think what they are missing is that when is comes to the basics of their message, which I see as advocating for access to weight loss surgery, I think all of us already agree.

So why not take that cash that they spent on bringing everyone to New York and use it to help support the bloggers that are already spreading a similar message? Because big corporations don’t do that. They are too afraid of letting go of that level of control. You may say things that are not approved by the multiple levels of corporate folks that need to approve any message. So, instead they will try to craft something similar but retain control of the messaging. We saw that at the meeting, and BariatricTV will be reviewing it in this weeks show. How’s that for a tease!

All in all the best thing I got out of it was that they want to help us. Cool, We’ll take all the help we can get. But in return they will need to understand that we (and I am referring to the blogger community not just BTV ) will call it like we see it. We have all worked hard to build a relationship of honesty with our audiences, and that can’t be bought.

[McNee]

Oh yea, I meant to add... as far as them addressing us as "consumers". We are consumers first, patients second. Consumers need to make informed decisions. If you are in need of emergency services, then yea.. maybe you are a patient first.

Otherwise as a potential patient you need to educate yourself not just about the procedure but about the surgeon, the clinic, everything involved so you can make the best decision for you. We speak with our wallets, even when it comes to choosing a surgeon.

I think the surgeons know this too. Yes, I'm sure there is some altruism involved on the part of the surgeons donating their time to perform Connie's and Sarah's surgery (and the others we've had donated recently), but they are also making a business decision. They are "buying" advertising via the WLSFA, they are "buying" good with with the rest of us in the hopes we'll tell others (paying customers) that are looking at having surgery about what they did for the WLSFA in the hopes of increasing their business.

You say you don't want to play the game, but the game doesn't have to be a bad thing. There are ways to play the game by some of your own rules.

[Stonehaven Farm]

I haven't had time to read your blog, will do so later after work but I did read something about you being offended by the term Consumer. Just an FYI, that is now the politically correct term for patients, medicaid recipients, insurance, etc.
I am not sure I am very impressed with the intent of this meeting, but that particular term shouldn't be taken out of context.
Jody