Sunday, March 9, 2014

The Disappearing Ones: Weight Loss Surgery, Shame, and Isolation

One of the most distressing things about Weight Loss Surgery (WLS) I have observed over the years has been the tendency of many people who get WLS to disappear after a few years.

I've been thinking about this a lot and have debated voicing my concerns in a public forum. I don't want to add to the stigma and shame that some post-WLS folks experience, yet I think it's important to highlight this issue.

Over the years, I've had several friends and acquaintances undergo WLS, usually gastric bypass. I always express to them my strong reservations about the possible long-term consequences of this decision, but I also believe that people are the boss of their own lives and it's not my job to police their choices. They are adults and they get to make their own life decisions, whether or not it's a choice I would make for my own life.

I try to be supportive of them afterwards without being judgmental, although it's not easy sometimes because I am not a fan of WLS. Still, they are my friends and I want the best for them, so I try to be as supportive as I can.

But it's been striking to me how often WLS folks follow a social pattern of increasing isolation afterwards. Many times they drop out of groups they previously frequented, away from previous friends, and become more and more isolated socially.

Let's be honest. The initial weight loss after WLS is often truly amazing, and they celebrate and advertise every second of that honeymoon broadly to the world. I don't blame them; that honeymoon period is pretty intoxicating. Anyone who has ever had a significant weight loss has felt it, and the weight loss after WLS is particularly jaw-dropping and probably rather exhilarating.

After a post-op adjustment period they often feel wonderful, they revel in their ability to buy new clothes, everyone congratulates them on how great they look, life is great, and they usually talk loud and long about how wonderful WLS is to anyone who will listen.

But after several years, things aren't always so great. Nutritional deficiencies begin to show up, especially for those with gastric bypass or other malabsorption procedures. Complications start to pile up. Anemia is a frequent companion for many, and often doesn't respond very easily to treatment. I've seen a number with headaches, gut issues, hypoglycemia episodes, hernias, seizures, broken bones, osteoporosis, additional surgeries, chronic pain, really serious eating-disordered behaviors, and addiction issues.

This post-WLS complications part is not so great, but it often gets hidden or shrugged off as unimportant compared to the importance of "getting healthy." (My response: How "healthy" are you really if you are dealing with health issues like these?)

A significant amount of weight is regained by many as the body adjusts and begins to get more efficient at absorbing calories again. But now the self-condemnation is even worse than before. Individuals often feel terribly guilty, ashamed and blame themselves for the regain.

Some start to indulge in weight loss extremism. Often they get back on the weight yo-yo rollercoaster, but this time with even more self-blame, more extreme diets, and more extremes of highs and lows in their weight trajectory. Some resort to even more extreme weight loss surgery procedures with truly scary side effects in order to "fix" the regained weight.

The way some of them talk about themselves is really sad; the self-condemnation and self-recriminations can be brutal. (To be fair....not all of them; some seem to do fine, both physically and emotionally.) But some of the self-loathing talk I've seen on WLS support groups and blogs is very distressing; it sure doesn't sound like emotionally healthy self-love or improved self-esteem.

Worse, some just start dropping out of life. They stop associating with people they hung out with before. They tend to start hibernating or withdrawing socially, or seeking new groups to be with. And they often stop going to WLS support groups, stop seeing their WLS doctors, or stop participating in post-WLS research studies.  (The number of drop-outs in WLS studies is really high, which is why you have to apply a lot of skepticism to many of the glowing research findings from them.)

This doesn't happen with everyone who has had WLS, of course. Some stick around and don't drop out socially at all. Some do great long-term, and even maintain the weight loss reasonably well. It's important not to exaggerate the problem....but I do see quite a few drop-outs happen.

And I especially see that post-WLS folks often stop associating with other fat people.

There could be a number of reasons for this. Some folks with WLS no longer want to hang out with fat people who haven't had the surgery; either they no longer identify with us, or they prefer to actively disassociate themselves with fat folk, as if we somehow might re-infect them with fatness via "bad" habits or a lack of all-consuming focus on weight loss. Perhaps they simply don't feel they have much in common with us any longer, or are tired of what they perceive to be the "excuses" they think we make around our fatness. Fair enough, I guess, though obviously I don't care for this reasoning.

Some fear the condemnation and "I told you so" attitudes of some people in the Fat-Acceptance (FA) community if their WLS has bad side-effects or if they end up with significant weight re-gain. We all know how hard it is to face people again when you've lost a lot of weight and then regained it eventually; how much harder must it be for those who went to the extremes of having WLS to face fat-acceptance friends after a regain. And to be fair, some FA folks are pretty unkind to folks who have had WLS. But even when we are welcoming and non-judgmental to WLS folks, they often avoid us.

In addition, shame at having regained substantial amounts of weight or experiencing negative health complications lead many WLS patients to drop contacts within the WLS community, the very people who should understand the most. Judgment within the WLS community can be EXTREMELY harsh towards those who don't act as relentlessly positive cheerleaders for the surgery and for weight loss. This turning on their own is a hushed-up secret in the WLS community, and the condemnation of formerly-supportive folks especially bitter to WLS survivors with substantial regain or side effects.

So many people who have had WLS find themselves increasingly isolated. They don't feel comfortable or welcome in fat-acceptance groups, they don't feel welcome in WLS groups if they've regained weight or had complications, and they've often isolated themselves from the friends and family they hung out with previously.

There can be other reasons for dropping out socially too. Some are embarrassed at the gastric side effects (like vomiting, gas, or fecal incontinence) that can go along with the surgery. They may stop participating in activities because they are afraid of embarrassing themselves at social events or because there aren't bathrooms close enough for them to feel confident about going somewhere. Or they develop side effects (like hypoglycemic seizures or extreme fatigue) that make it hard for them to get out on their own. Or they don't always feel well enough to get out much because of the anemia or the other nutritional deficiencies.

No, I won't tell any stories here of friends of mine who have had WLS and dropped out. Their stories are their own, and I care for them too much to dissect their stories here. But I think a non-identifying story about a casual acquaintance might be illustrative.

I went to a number of NAAFA conferences over the years. I remember one where I met a woman who was a few months post-op from gastric bypass, but her wound hadn't healed. She was very pro FA but just felt she had too many health concerns not to consider the surgery. So she tried to bridge both worlds but was understandably nervous about coming back to a NAAFA conference after having had the surgery.

I could empathize with her reasons for the surgery, even if I didn't agree with the decision, and wanted to make sure she still felt welcomed and valued. So we hung around together that conference. I enjoyed her company. I helped her pack her infected wound and helped with some of her needed self-care. We talked a lot about why she did the surgery and the pros and cons of it. It wasn't a decision I would have made, but I could understand her choice. I wished her only the best when we parted.

I saw her again the next year. She was very honest about how bad some of the G.I. effects can be. She said she'd heard of some WLS folks who were fired from their jobs or asked to leave their apartment complexes because of the smell from the G.I. issues. She spoke about the folks who experienced unpredictable soiling of themselves and began curtailing their activities as a result. Or who couldn't cope with the unexpected and violent vomiting that can occur without much warning.

She seemed okay, on the whole. She had severe issues with anemia that didn't respond well to treatment, and she'd been doing some IV iron treatments to help. She had some of the nasty G.I. side effects but was still employed and still coping. Again, I wished her well when we parted.

However, I never saw her again at any NAAFA conference. Perhaps she returned in a year that I didn't, but I never saw her in any of the conference photos online. There were no obituaries posted or anything, she just dropped off the social radar. Maybe she lost lots of weight and felt she didn't have anything in common with NAAFA folks anymore, maybe she felt too judged by some folks at the conference, or maybe she just didn't have the money to come anymore; who knows?  But I know I was troubled at how she dropped off the social radar.

I've seen this happen with dear friends and acquaintances in the birth world too. They have WLS, stick around for a while, but after a few years no longer frequent the same groups, even though these are birth groups and not FA groups.

I don't know why many of my acquaintances who got WLS have dropped out of touch. It might be just moving on with life and having new interests. It might be not wanting to be around people who remind them of what they used to be like. It might be shame over weight regain. It might be embarrassment over G.I. side effects. It might be having to deal with medical complications like anemia or seizures. It could simply be coincidence, but I doubt it.

Whatever it is, I am deeply troubled and saddened by my observation of how many WLS patients drop out of touch over time. And I was reminded of that again when I came across the study below on PubMed.

The pressure on WLS folks to only talk about the good, not the bad, and the shame they feel if they experience regain only makes it harder for these folks to find their way to a happy, balanced life. As one blogger writes:
There seems a conspiracy of silence among patients as well as providers. Patients who regain and live are reluctant to tell about their surgeries because both the public and their doctors blame them for their gain. Patients who have become ill from the surgery and live long enough to be reversed and get back normal digestion are often reluctant to talk about their bad experiences because new ops and providers can get mean to those who talk too negatively about weight loss surgery. 
Patients are so sold on this surgery that until they get really ill, they refuse to admit that it has a high complication rate and a higher recidivism rate...Even successful patients who have suffered difficult complications and talk about them in blogs have taken a lot of criticism from "the community".
We need less silence from the WLS folks, whatever their experience. 

We need less silencing and shaming in the WLS community towards those WLS folks who have complications or regain. And we need more empathy from the FA community towards folks who have had WLS, whatever their experiences; they are likely still going to be fat to some degree and still deserve support for their experiences, whatever they are.

We want WLS folks to stick around in our lives, whatever their weight is, and whether they are "successful" or not. Our love for them should have nothing to do with whether or not they are fat or skinny, whether they've maintained a loss, whether they've lost and regained, whether they have complications, or whether they are the poster person for the benefits of WLS. Whoever they are, whatever they look like, whatever they weigh, we love them and we value them and we don't want to lose touch with them.

If you've had WLS, don't disappear, don't hide, don't be silenced.  Speak out and stay in touch. We love and value you and want you in our lives.
*Do you know of other good support groups or blogs for WLS survivors who have experienced complications or regain and need to talk about this openly?  Feel free to post your suggestions in the comments.  
** Comments are welcome but please recognize the mission of this blog when commenting. Hate speech and pro-diet talk is not appropriate here and will not be published. If you are pro-WLS, there are plenty of other venues for sharing that view; this is not the place to promote it. However, if you wish to discuss the specific issues discussed in the post, you are welcome to do so as long as your comments are in the spirit of the blog and its mission. 


Reference

Int J Qual Stud Health Well-being. 2010 Nov 18;5(4). doi: 10.3402/qhw.v5i4.5553. "My quality of life is worse compared to my earlier life": Living with chronic problems after weight loss surgery. Groven KS, RÃ¥heim M, Engelsrud G. PMID: 21103070
Weight loss surgery is commonly regarded as improving individuals' health and social life, and resulting in a happier and more active life for those defined as "morbidly obese." However, some researchers have started to doubt whether these positive outcomes apply to everyone and this article explores this doubt further. More specifically, we focus on the experiences of women whose life situation became worse after weight loss surgery. The material draws on qualitative interviews of five Norwegian women undergoing the irreversible gastric bypass procedure. Our findings illustrate that the women lived seemingly "normal" lives prior to the surgery with few signs of illness. Worries about future illness as well as social stigma because of their body shape motivated them to undergo weight loss surgery. After the surgery, however, their situation was profoundly changed and their lives were dramatically restricted. Chronic pain, loss of energy, as well as feelings of shame and failure for having these problems not only limited their social lives but it also made them less physically active. In addition, they had difficulties taking care of their children, and functioning satisfactorily at work. Accordingly, the women gradually felt more "disabled," regarding themselves as "outsiders" whose problems needed to be kept private. The results highlight some "subtle" consequences of weight loss surgery, particularly the shame and stigma experienced by those whose lives became dramatically worse. Living in a society where negative impacts of weight loss surgery are more or less neglected in research as well as in the public debate the women seemed to suffer in silence. Their problems were clearly present and felt in the body but not talked about and shared with others.
Resources

8 comments:

Anonymous said...

This is ridiculous. Obviously you can't possibly know that many people with WLS and the benefits far outweigh the side effects in 98% of the patients.

Anonymous said...

If you want to see how WLS patients fare in real life, as opposed to some online documents you read, visit thinner times.com/forum and read all the posts. Your ideas about weight loss are obviously coming from a place of fear and are totally ridiculous. The symptoms you mentioned are rare. Not every one experiences horrible gastrointestinal issues and I've known exactly none that had to move out of their homes. Please. Quit being jealous and do some real research about how wonderful your life will be when you are at a normal BMI and weight for your frame. NOTHING can compare to that feeling of freedom and health.

Sharnee said...

I doubt that this post will actually appear on the site because for all your talk of letting others live their own lives; you strike me as overly self-righteous and not accepting of differing points of views.

While you have sited several sources, your blog post was purely anecdotal. You made a lot of very strange suppositions about the reasons you never saw a virtual stranger again. You state that you vocalize your opinion about WLS to people who have undergone the procedure and wonder why they have chosen to "drop out of society". Note these people most likely haven't dropped out of society, they simply don't want to be where you are. I know I wouldn't want to be subjected to your self-righteous opinion after I have made a very personal decision for my own health and well being. Also, you fail to note that while there are possible complications from the surgery; there are also highly likely complications that can arise from be exacerbated by or long-term obesity. Diabetes, sleep apnea, heart disease, certain cancers, to name a few.

Quite honestly, a vast many of us WLS patiends did exactly the opposite of your wild suppositions - we dropped in to society. Personally, I make a far greater effort to get my children out of the house on weekends. Instead of sitting on a park bench, watching them play, I actually have the energy to play WITH them. I go work out and have met people that I would not meet while sitting on my couch watching TV and mindlessly snacking as I once did. I have been in my congregation for nearly a decade and the only reason I know anyone is because of my children. Now that I have lost a lot of weight and feel really good about myself, I feel more confident reaching back when people reach out to me. As a result, I have socialized more in the past six months than I did in the past ten years.

The only relationships thus far that have changed are the ones with people who cannot understand that I have chosen a lifestyle change in which my life no longer revolves around food. I tend to decrease my association with friends who repeatedly insist that I eat a piece of fried chicken or a cupcake loaded with fats and calories. Those friends who only want to eat at a buffet and try to make me feel bad about preferring not to go with them. I don't love those friends any less; but I have worked hard to improve my health. I also enjoy my new appearance. I feel that anyone who strongly encourages me to disregard my positive lifestyle changes really doesn't have my best interest at heart. I would rather go to the gym than a restaurant these days and any friend, who wants to join me is the friend with whom I spend more time.


Well-Rounded Mama said...

Well, the tone of some of the comments certainly reflect how some people with WLS can be really critical and unkind to anyone who even remotely questions WLS. Imagine how they respond to someone with WLS and who experiences significant complications or substantial regain and is honest about it.

I've seen that very response a number of times on WLS sites and blogs, which indeed I HAVE visited to try and understand what my dear friends with WLS might be feeling or experiencing. While some folks there are supportive and helpful towards those with complications, many are condemning and judgmental and silencing, especially those who are only a few years post-op and are still in the honeymoon phase and not dealing with as many of the long-term malabsorption issues. They are in denial that these things do indeed occur long-term to many folks with malabsorptive procedures, and that it can occur even with people who follow the program, take their vitamins, and get post-op support. Does it happen to everyone? Of course not. But it does happen to quite a few, and we need to stop denying and shaming those people's experiences.

Being in FA doesn't mean opposing exercise or good nutrition; HAES supports people striving to be healthy. I personally would not use WLS towards that goal because I feel the risks outweigh the benefits in the long-term, but I do understand why some people choose it and I am empathetic about that. I would not choose WLS, but if you do, then I wish you well.

You are your own boss; you get to choose your own healthcare decisions. I'm sorry that some people read the post as a condemnation of their decision to get WLS. That wasn't what the post was about at all. Instead, it was a plea for more understanding and less judgment from BOTH the FA and WLS communities, so that people with WLS and complications feel less judged and more "heard" in their experiences. I think there is room for improvement on this in BOTH communities.

Mich said...

Well these three posts merely prove what Mama had said, and add more weight to her argument. As for Sharnee's claim that the post is anecdotal, the studies are anecdotal because of the high drop out rate, so there is no clinical trial evidence to fall back on.

Anon #2 seems to think you're jealous, which is hardly true. It's clear he/she hasn't read a single entry on the blog, possibly he was responding to a mail call to come post.

I enjoyed reading this entry, and it merely confirms the other "studies" and blogs out there about how ppl just drop away, or even die.

Anonymous said...

Thanks for posting this! I was actually considerino WLS (I wanted the lapband) last year and went through the entire process, up to the point that I was to schedule my surgery. I was so close, but then my doctor, who had know about my intent for months, said she was no longer going to sign off on the surgery because she wanted to me do additional dieting and made some ridiculous comment a out how losing weight was so "easy" and "simple as choosing an apple over a chocolate bar." I was devastated and offended, especially with how rudely and unprofessionally she had handled it.

I opted to find a new doctor that was closer to me and she was amazing. She wasn't a huge advocate for the surgery, but told me she would help me with my "observation" period that I needed for my insurance requirement and never once shamed me or tried to scare me. In the end, I decided not to have the surgery because I realized the real reason I was trying to get the surgery was out of fear. I had fallen for the trap that obesity was directly related to poor health and that sooner or later I was gonna die just because I was fat. As you know, that's not true! And since I had no other preexisting conditions (I'm in perfect health besides my weight), it made little sense for me to take a knife to my body and risk years of complications and discomfort.

I have friends who have had the surgery and others that are considering it, but I share my story when asked. What makes me saddest is when I see friends that have the surgery and they are still uncomfortable with their bodies and see themselves as fat (like it's a bad thing). The weight might be gone, but the self esteem issues are still there - and a lot of people think they won't be.

I also noticed in my time on WLS forums that new comers frequently asked if there was anyone on the site that had the surgery for several years and could give their experiences. The answer that was always given was that the oldies didn't stick around because their surgeries were successful and they no longer needed the support of the group because they had adjusted. While that might be true for many, I do think it strange at how few really stuck around over the years!

Anyways, thank you for sharing this. <3

Anonymous said...

I'm 6 months post-op from gastric bypass and Mama, you are so right. Since my surgery I avoid pretty much every event where there might be food, so that cuts out a lot of social events. I was intellectually against having the surgery, but was so tired of being so much bigger than my boyfriend who was able to go to the same event as me, but he could get the souvenir t-shirt and fit in all the seats. I wanted to be able to do normal things with him without having to worry about there being armless chairs available. (I had only dated big men previously.) The surgery doesn't make people skinny, just less fat, so I still can't get into the souvenir t-shirt, and now I'm so busy counting grams of protein and avoiding social food events that I go to less events with him. I don't go onto WLS web pages anymore because I regret my surgery and they are so mean to me. The doctor says everything with my surgery went perfectly, but I can eat the same as before the surgery, maybe 50% less than before, but still way more than my boyfriend can eat. I didn't cheat on the diet. The doctor blames me, the WLS support group people don't want to believe that some of us never dump or vomit and can eat sugar and grease. I'm ashamed to be around my anarchist friends because I believed in fat acceptance the whole time but I was weak and gave in to the dream of being thin. What's funny is that I can finally go to one feminist website and order a "riots not diets" t-shirt that wouldn't have fit me before my surgery.

I think about leaving my boyfriend and becoming an alcoholic because I am so much more depressed than I used to be and want to avoid being conscious as often as possible. I hate my body in ways I didn't before, and I respect myself less. Thank you for being kind. We do drop out of life.

Well-Rounded Mama said...

Anonymous, I'm so sorry that the surgery wasn't what you wanted it to be. I'm sorry too that you are having difficulty finding support. I hope you know about the online support groups for people who have had the surgery and regret it or who are having complications.

Remember, though, you can start loving your body at ANY point, pre-surgery, post-surgery, thin, fat, or anywhere in between. It's a conscious decision to love your body as it is. It's okay to be frustrated with it sometimes; life doesn't hand out bodies with equal abilities or gifts, and some have more challenges than others. But it's a question of where you choose to expend your energy....bemoaning the bad deal or faults of your body, or learning to love what you do have.

I choose to love what I do have. I hope you will too.