Surviving massive weight loss

Yesterday in Two bits about a shave and a haircut I wrote about a mild anxiety attack I had over, of all things, a haircut. In trying to explain what was happening, the essay wandered into the topic of body dysmorphia and my experience with that condition when I lost nearly 200 pounds. Among the responses was a comment that “you took an amazing success and turned it into a shitstorm.” There’s way too much in those 11 words to unpack in a reply to the comment so here ya go, another post.

Weight loss is not all daffodils and butterflies
Autism figures into much of this but let’s remove that from the equation for the moment and just talk about body dysmorphia in relation to body transformation in general. (I promise I’ll loop back into autism before it’s over.) BDD or Body dysmorphic disorder, as it is officially known, is an “obsessive preoccupation that some aspect of one’s own appearance is severely flawed and warrants exceptional measures to hide or fix it.” A more useful definition of BDD for the context of body transformation is that a person’s perception of their own body is out of sync with the reality. That encompasses conventional cases such as someone believing that their ears are too big as well as someone whose body changes dramatically to no longer conform to the person’s self-image. Both constitute a mismatch between perception and reality.

For example, suppose that a person loses a limb in an accident. Phantom pains are a common complaint after such injuries and they can be debilitating. Conventional wisdom held for many years that such pains were the result of nerve damage and the usual treatment was successive encroachment on the amputation in hopes that a clean cut of the nerve in an undamaged area would resolve the pain. In this way many unfortunate sufferers who began with a minimal amputation saw their remaining limb successively reduced to a stub in an effort to relieve the phantom pains.

In his groundbreaking work with phantom limb sufferers, V.S. Ramachandran discovered that many such cases were actually a form of BDD in which the patient’s brain had not caught up to the fact that a limb was missing.  The remaining nerves transmitted sensations that the brain interpreted as pain that was located in the missing limb. Ramachandran was able to successfully treat phantom limb pain through the use of a mirror box that gave the patient the visual impression that their body was intact. When confronted with this image, the patient’s subconscious began to interpret the new sensory input as normal instead of as painful. Some patients saw immediate improvement and many were completely cured after several sessions.

Jason Young in 2013
after loosing 13 stone
(~ 182 lbs)

Though not as sudden, massive weight loss also throws a person’s perception of their own body out of sync with reality. We all come to understand our personal limitations and after massive weight loss these change. Contrary to popular belief, it’s not always for the better either. In my case I became very cold sensitive. Sitting or lying down became uncomfortable when bones and joints that had previously been well padded were now directly bearing contact pressure. Foods tasted differently. My heart rate and blood pressure actually went too low, even after stopping all the meds, because all the systems in my body got thrown out of whack. The biggest thing though was large skin folds hanging from my arms, chest, waist, and thighs that were both painful and unsightly. Stop looking for “some aspect of one’s own appearance is severely flawed and warrants exceptional measures to hide or fix it,” we have a winner.

Jason Young pictured at right was brave enough to allow post weight loss photos to be published in the UK’s Daily Mail. His excess skin was estimated at 4 stone (~56 lbs) and was causing severe back pain. The psychological impact isn’t discussed in depth in the accompanying article other than to say that Jason eventually became suicidal, a side effect we have in common.

Smiling “after” photo.
Skin folds not included.

To the right is also my own “after” photo. What isn’t apparent in my photo is that my hanging skin was even worse than Jason’s, since I lost about the same amount of weight but am much shorter. Note that despite dropping from size 50 pants to 36, you still can’t see my belt buckle. Much of the excess skin is hidden under the pants but there was so much that some of it overflowed into, and is contained by, the shirt.  Had I worn the shirt untucked, the skin would have hung below the shirt tails.  The other thing you can’t see in the still photo is that all that loose skin pooled in the front of the shirt would be in constant motion while I walked and taking the stairs was painful.

Our consciousness, our identities, the entity we think of as “me,” are phenomena that emerge from the complex systems of our brains. A very large perturbation in those complex systems–death of a loved one, changing jobs, significant body transformation–cascades into every aspect of what makes us who we are and it changes us in ways we don’t predict.  Lose a parent, lose a limb, lose a job, and everyone expects these events to be traumatic. Lose a lot of weight and many, like my commentor, see only an “amazing success” despite that this changes in ways that are at once profound and unexpected that person’s self-image and how they are perceived by others.

For someone living with massive weight loss the reality is that although many things are better, many things are also worse and the sheer amount of things that are different can be overwhelming in itself. Ask a fat person what its like to be fat and you are likely to hear that people are mean and predjudiced. It’s a bit like asking a fish to describe water.  Ask a skinny person who used to be fat what it was like and you will hear a hundred different ways in which obesity had influenced relationships and physical interactions in the world that were revealed only by their absence. And, like a fish out of water, strategies and behaviors accumulated over a lifetime of obesity suddenly don’t work as well.

Friends and family seeing the smiling, fully clothed after photo ten to assume that you are the exact same person in every way, but with some improvements. It is not intuitive that the massive weight loss has brought with it a raft of sensory issues, the need to re-learn how to interact with others, an identity crisis, an obsessive need to hide all the the hanging skin, physical discomfort, and even the “uncanny valley” feeling when seeing yourself in the mirror. Losing a loved one or a job are external events and people readily accept these as traumatic things that change us. Losing your own sense of who you are and how you fit, figuratively and literally, into the world rocks you to the core, but what most people see and expect is that this change represents unqualified success.

Just because a body transformation is elective, doesn’t mean it is not traumatic.
The best outcome you can hope for is that, in your own case,
the benefits outweigh the downside enough to make it worth while.
Successfully losing weight doesn’t mean it works out that way.

I promised to bring this back to autism and one of my autistic co-morbidities is a thing called misproprioception. Basically, it means that your body parts are not quite where their sensory input reports them to be. It is one of many causes for clumsiness. It can present as being accident prone. With regard to personal relationships it can mean the difference between caressing someone’s cheek versus poking them in the eye while trying to caress their cheek.

It was bad enough when my brain and my body were in sync. After losing weight my physical sensations were displaced by circumference, and frequently also vertical height when the sensation originated on or near the excess skin.  So for example if I leaned into a counter I would perceive it as being much higher than it was and had a tendency to topple onto it or spill drinks and food when it turned out to be much lower. I very quickly had to develop a discipline to move slowly and deliberately, not to trust my body to report things accurately, and to touch-check before setting anything down.

Someone who can take these things for granted might assume it’s a simple matter of adjusting like when you get a new pair of glasses. But there’s a huge difference between a tool like a pair of glasses gives unexpected feedback versus the surreal feeling of your own internal senses misreporting your environment, like being on an acid trip that never stops. Which, in isolation might be manageable but all this is happening at the same time all the people in the world start treating you differently.

No single one of these issues is easily or quickly resolved. Nor can they be considered in isolation because they all happen at once and that fact means they compound and interact on each other.  Whatever else you believe about massive weight loss, don’t believe it’s only about weight.

Assignment of culpability
One of the stigmas of obesity is the moral judgement that goes along with it.  The theory is that fat people did it to themselves therefore they deserve the contempt heaped upon them. We look in their grocery cart or sneak a glance when the waiter brings their meal, shake our heads and silently think to ourselves “Look at that. No wonder they are fat.  And I bet they blame it all on somebody else.” If we have a twinge of conscience over this line of thought, we remind ourselves it’s okay to think and talk this way because, at least in this case, it reflects their character and not ours. “It’s not mean” we tell ourselves. “Just honest.”

I see some of that assignment of culpability in the comment that “you took an amazing success and turned it into a shitstorm,” in reference to the issues I faced after massive weight loss that took me to the brink of suicide.  Let’s be clear here – when you look in the mirror and can objectively verify the image there is you, but your subconscious refuses to acknowledge that fact and tells you that person in the mirror is an imposter, that’s very traumatic and it has nothing to do with choice.  If, like me, integrity and honesty are at the core of your personal identity and you suddenly feel compelled to hide who and what you are, that’s also very traumatic and it has nothing to do with choice.

Nor do these things indicate mental illness. Significant body transformation is inherently traumatic. It screws with your senses, it screws with your identity, it presents a reality that differs from the one lingering in your head and that mismatch can be devastating. When an athlete suffers a debilitating illness or injury we understand that their profound depression. Their identity was tied up in a sport they can’t participate in any longer. But when someone loses a lot of weight and has problems adjusting they are just being self-destructive. Yet in both cases the root cause is a significant mismatch in the person’s identity and self-image before and after. They are the same disorder so why does one garner sympathy and the other is so easily dismissed? There’s a better case to be made for mental illness if someone were not profoundly impacted by such changes.

After my weight loss, my reality and my identity underwent a tectonic shift. The “shitstorm” was just me trying like hell to hang on long enough to make the adjustment.  That I wasn’t able to do that is a measure of just how hard that transition is, and not the self-destructive act that the comment would imply. I didn’t turn a success into a shitstorm. I rode a bull and managed to hang on a good long time before getting bucked off.

Some unsolicited advice
Despite the push back, I don’t harbor any ill will over the comment that inspired this post because it reflects what is pretty much the standard way of thinking about obesity and weight loss. These are to most people two sides of a very uncomplicated equation: obesity means medical problems and loss of respect; weight loss resolves those things.

But even in this one-dimensional view it should be obvious that things are not that simple. When in desperation I put half of that weight back on, I didn’t turn an amazing success into a shitstorm. Of the nearly 200 lbs I lost, I’m still down almost 100 of them. The suicidal thoughts are gone, my relationship with my wife is better than ever, and I’m enjoying my work again. To my way of thinking, I pulled an amazing success out of a shitstorm, not the other way around.

So my first bit of advice is don’t assume that a tweet, or a blog post, or even the rambling tomes that I produce, tells the whole story. A bit of biography consumed in 10 minutes or less does not reveal the breadth and complexity of a person. Coming to understand a person’s character takes an investment of time and a dialog. It’s a negotiation, not an exposition, and one that never truly ends.

My second bit of advice is to have made that investment and have had quite a bit of dialog with the other person before presuming to tell them how they fucked up. It is not possible give and receive advice of that type without an existing bond of trust. In the absence of such a bond it comes off as self-righteous and contemptuous.  Even if the intent is sincere, explaining that doesn’t help. The appeal to sincerity requires in the other person a level of trust that, if it were present, would obviate the need for the explanation. Worse, it asks for more trust than is reciprocated.

Sorry if this sounds a bit preachy. Normally I try to avoid prescriptive advice so when I do feel compelled to give it I’m not very good at it. However, I’ve been wanting to revisit the weight loss issues that led me to deliberately put a bunch of weight back on and the comment on the last post gave me the motivation. I hope this has shed some light on a topic that is often painful and rarely well understood.





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2 Responses to Surviving massive weight loss

  1. Kristine Arai says:

    Your ability to articulate your very complex inner world is a gift to the rest of us. We not only understand you better, we understand ourselves better. Please don’t stop.

    • T.Rob says:

      Thanks! A lot of what goes here is about challenges and tends to be personal and a bit on the serious side. The lighter fare shows up over at The Odd is Silent, should you ever need to cleanse the palete after one of these.

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