X-Post: Support Group Drama: Advice Please!

Please read the following situations that occurred at two separate locations which will remain nameless and tell me how you would handle it.

Situation #1:

-I went to a support group at a facility that performs Revisions and DS and introduced myself as a Band to DS patient.

-I stated that I regained due to band complications (the surgery failed the patient).

-The moderator then proceeds to tell the group that if they don’t continue to diet & exercise then they will be unsuccessful (the patient failed the surgery).

-This comment made me feel as if I was being seen as a patient in denial. I don’t have anything against patients who have a hard time changing their behavior after surgery but that wasn’t the case with me. I wasn’t able to keep down solid protein which led to vomiting on almost daily basis. I wasn’t able to get in a lot of exercise because of the consistent port site pain.

Situation #2:

-I moved on to another support group at a facility that performs Revisions and DS and introduced myself as a Band to DS patient.

-I stated that the reason I felt that DS is the best choice for me is because I wanted a surgery that would give me the best chance at losing all of my excess weight & the least chance of weight regain.

-A patient stated that they were interested in DS but decided against it because they were told that it causes a lot of side effects.

-I stated that the surgeon can decrease the amount of complications by making a longer common channel.

-The moderator completely disregarded everything I said and proceeded to inform the group that DS has the highest complication rate. She also said DS patients take 15-20 pills a day, have bad body odor, constant diarrhea and end up blind!!!

-This comment left me shocked & speechless. I could understand if I was at a place that doesn’t offer DS as an option but I was at a facility where DS is performed by an actual Veteran DS Surgeon.

What would you do in these two separate situations?

What would you say in your response exactly so that you can state the correct information while remaining calm & respectful???

Sorry for the long rant. It’s just that I wish I could get support at the support groups instead of being blamed for my regain & being treated like DS was a bad choice.

Mika

I would discuss it with the surgeon since they are probably the ones hiring the support staff. If nothing else the mod is keeping them from making money on the more expensive DS surgery. And after all money is the motivating factor in any business including medicine. Correcting the mod would only make you look bad and get them annoyed with you. Maybe there is a reason they say that, perhaps warning of worst case scenario so they aren't surprised later on by some or all side effects.

Aren't all of the second situations at least a partial possibility even the blindness if people don't get their vitamins and take correct care of themselves. No I don't for a second think any one person would have ALL those things but I've read of all those (except blindness) happening to some degree to lots of folks. I'm by far uninformed about DS but have read the forum several times.

So my choice would be talk to the surgeon and let him handle his own employees. I know it's tempting to share our information but that may not be the way that group is run.  Having a band tho I know what you mean about being blamed for our lack of success and yes I just read an article that said 90% of bands fail to work for the patient! That is a pretty high rate!

How hideous!  I think you did great for being able to remain in your seat for the duration of the session!  I find that in situations like those you experienced, it really does no good to try to respond to that type of ignorance.  I would have left the sessions as soon as I felt it possible.  You really and truly do not have to listen to that type of judgemental editorializing.  Some people just don't really get it, and that is about them, not about you.   I would be tempted to write a letter to the moderators or sponsors of each of the  groups.  It can be quite simple, such as you laid out in your post.  Hopefully, it will make a difference for the next person coming through their door.

Trust your intuition, and just keep trying - surely there is a group out there for you. 

Good luck!!