Disclaimer: This blog post does not reflect the views of the OAC, the National Board of Directors or staff. Information contained in this blog post is not based on scientific research and has not been validated.
In the first part of this blog series, I expressed the sentiment that I (and, I suspected, other longer term post-ops) feel reluctance to participate in bariatric surgical support groups for reasons other than logistical ones. In the second post, I went over some of the dynamics that, from my perspective, frame the surgical support group experience.
Now, I’d like to share with you some of what my fellow longer-term post-ops have shared with me, either through my informal poll or through messages and e-mail.
When I think of my own hesitation to attend support group, I usually first think about the subject matter. Sometimes it doesn’t seem to fit my life very well. It did when I first had surgery but as a longer-term post-op it seems a little less relevant to my day-to-day life.
I wondered if others felt this way, so I asked. In my poll I asked people if they felt the topics at support group were relevant to their everyday lives. Of the 100 respondents, 75 answered this question with 45 percent saying yes, they did feel the topics were relevant, 21 percent said no, 33 percent said they were unsure. I then asked respondents to explain their answer and there were three points that got mentioned frequently.
As I thought about these points, I began to realize, however, that the discord that some longer-term post-ops feel is not necessarily with the subject matter itself, but the fact that newer post-ops and longer-term post-ops approach certain subjects from different perspectives.
Below I’ve outlined each of the three topics and how, from my experience and what others have told me, longer-term post-ops approach them.
“My support group is mostly geared toward newbies and pre-ops”
Of the 32 people who answered they didn’t feel the topics at support group were relevant to their lives, 13 people expressed this sentiment in some way.
As I said above, I believe newer post-ops and longer-term post-ops can approach the same topic from very different perspectives. I think the alienation I personally feel is not so much that the support group itself is catered toward newbies and pre-ops but that there aren’t enough long-termers like myself present to represent that perspective. As such, I can sometimes be the only one talking from that perspective and that makes the conversation less relevant to me, because I’m not getting feedback on what I’m experiencing.
Just to give some examples, here are two topics where I’ve heard vastly different perspectives from newer post-ops versus longer-term post-ops.
- Eating: I’ve experienced, and many post-ops have told me about, a discord in how we approach this subject. A newer post-op is more likely to have severe restriction. As such, their primary focus is getting enough food and nutrients. Discussions about food can (and often do) center on eating strategies to properly fuel the body and support on-going weight loss. Conversely, a longer-term post-op is more likely to have hit their natural plateau. Further, many have larger eating capacities than they had as a newer post-op. Some may have experienced regain. A conversation about food that might be relevant to a longer-term post-op, then, might focus on strategies to avoid temptation, re-enforcing the basic bariatric eating style (i.e. What to do when you’ve “fallen off the wagon.”), etc.
- Weight Loss: Weight loss surgery being what it is, newer post-ops (and even up to and through the two year mark) are in the losing phase. This is accompanied by a lot of strong emotions. There’s joy, fear, determination. But the main point is that they are losing and that losing is their rightful goal. For a longer-term post-op who has hit their natural plateau, losing is no longer the goal, but maintaining. I heard from many longer-term post-ops that they are confused about how to eat to maintain their weight (and whether they should, in fact, eat differently than they had been up to that point) and that maintenance isn’t a frequent subject at their surgical support group.
“I regained and I don’t want others to know.”
This is a sentiment I personally know very well. From the patient’s perspective, interacting with the surgeon’s office after you’ve regained is something akin to going to the principal’s office. I have nothing but admiration for the people who are willing to do that for themselves. However, I can also understand the sentiment of those who don’t.
To combat regain after bariatric surgery takes honesty and bravery. And many of us are honest and brave, because if we weren’t we wouldn’t have had surgery in the first place. But still, regain seems to feel like the “dirty little secret” you don’t want anyone to know about.
From my personal experience, this has to do with two things, both of them having to do with perception.
The first perception is that the patients in the support group room are going to judge you if you’ve regained. Having been judged for most of our lives as people affected by obesity, this sentiment should not be hard to understand. I also heard from many longer-term post-ops that in the midst of dealing with regain it’s hard to hear about others losing weight rapidly. These factors all seemed to contribute to feelings of depression which then seemed to lead to avoidance of support group.
The other factor is the perception that our bariatric staff are somehow judging us. In my poll I heard things like, “Our practice doesn’t talk about regain because they don’t want to scare the pre-ops.”
I don’t know if that’s true but I will say that I’ve heard the same through emails, messages and on my social media platforms many times. This seems to indicate that, at the very least, regain needs to be discussed more! But that and more recommendations are for my next post.
“I feel like I give more support than I get.”
This sentiment is important because more and more longer-term post-ops are turning to non-surgical support groups. There are huge online communities of longer-term post-ops and I think this is because people perceive that they are more likely to get as much support as they give if they join support groups online, especially those with higher memberships of longer-term post-ops.
As it stands, I personally think this is just a numbers problem. If we accept the assumption (and keep in mind that we don’t have to accept it) that longer-term post-ops are most likely to get relevant support from other longer-term post-ops, then a lack of attendance of longer-term post-ops can certainly cause a person to feel this way.
This sentiment is the reason why I’ve been reluctant to attend my surgical support group in the past. I don’t mind sharing my experiences with newer post-ops nor do I mind answering questions. I’m also not shy about sharing my experiences but it does get a little lonely at times!
I can clearly recall one meeting where I mentioned being able to eat fairly heartily (for a bariatric surgery post-op) to which many of the fellow group attendees were incredulous. This wasn’t any sort of intentional alienation, but the differences in our experiences meant that many of the attendees were simply unlikely to relate to my experience.
Why is this even important?
While I think that online and peer-led support communities are important, I also think they can be a danger zone for misinformation. Some groups are very vigilant about ensuring accurate information is disseminated. I’ve seen others that have no such vigilance.
Heralding back to my last post, the world of bariatrics is still largely un-standardized. We each have different sets of rules and, because of this, we put a lot of stock into peer support. We are constantly asking questions, comparing programs, troubleshooting within the patient community. I cannot count how many times I’ve had to tell someone on my Facebook Page (urge…no, beg really!) to seek out the advice of their bariatric or medical professional. But we cannot assume every peer-led support group leader is adequately educated to do that. I’m not even sure if I am!
That’s one reason I think surgical support group is worth fighting for. It puts professional bariatric staff face to face with patients. And if we can get the model of a fully inclusive support group right (that is, a support group where pre-ops and post-ops of all surgery ages feel topics are relevant and helpful) then I think information flow will improve on several levels.
Stay tuned for the final part in this series where I will make some recommendations, based on what I’ve heard from longer-term post-ops and I’ll highlight several support groups I’ve found that sport impressive long-term attendance.
About the Author
Nikki Massie is a professional writer based in Baltimore, Md. She underwent Roux-en-Y gastric bypass surgery in 2008. She also lives in Baltimore with her two daughters, dog and cat. To learn more about Nikki, please visit her blog www.bariatricfoodie.com.