35: Exploring deeper

Revisiting the recovery I thought was long in the past

I started this newsletter after being diagnosed autistic right around my 45th birthday. I’ve used it to help me work through and process what I have been feeling and learning. Writing has helped me discover (admit, more accurately) that I had an unhealthy relationship with alcohol. That led me to explore alcohol recovery communities, where I found great comfort and empathy in the stories I heard. Writing these posts has helped me immensely in terms of my own self understanding and my journey to acceptance. 

As I’ve explored the recovery community I’ve learned that people seeking recovery from many different things have used the twelve step program of alcoholics anonymous to facilitate and structure their journey. In exploring some of those, I started to peek into something I have carried deep inside me for the last twenty five years that I have been reluctant to revisit. The summer I turned 21 I developed an eating disorder, which I wrote about here. Reading that post now, I realize I was just scratching at the surface, trying to provide an explanation that was more retrospective than active, as if that experience existed only in the past.

I’ve written about the routine that I’ve developed during the pandemic and how much it has helped me, and also how much I have grown dependent on it. Listening to a recovery podcast recently that was focused on eating disorders, a dietitian said something that resonated in an uncomfortably close way. She was talking about exercise and how people with eating disorders sometimes turn to exercise as a substitute, “if I can’t restrict [my eating],” they say, “I’m going to exercise more.” A key sign, the dietician said, was if a person has a rigid insistence on doing a specific exercise every day, like running a certain number of miles, and they never want to vary from that routine. That sounded familiar, but then she said that if a person in this situation does miss a day, or doesn’t exercise as much as normal, they feel bad about themselves, as if they are doing something wrong. 

Hearing this gave me pause. I get very upset when my routine varies, which is something I attribute to autism. But if I dig a little deeper, it’s not just that I get upset at the disruption in pattern, there is also an element of shame and guilt at not completing the tasks I expect myself to do each morning, most notably my long run.  I started to admit to myself what I’ve known for quite a while but I have been very reluctant to say out loud. I run every day not just because of my autistic desire for routine, or because it makes me feel good, is meditative, gives me energy, and soothes any budding frustrations I’m feeling. I run every day, and weigh myself every day, because I feel good about the fact that my weight is significantly lower than it has been at any point in my life since I was 23, which is when I started recovery from my eating disorder. And, if I’m honest, I’d prefer to keep it that way.

The last time I went to my doctor for my annual checkup, which I used to do every year but which I skipped last year due the pandemic, he said something he’s never said before (amazingly, I’ve had the same GP for most of the last 20 years). He said, “Look at this,” as he swiveled his computer screen toward me. This is what he shared:

“This is your body weight,” he said, noting that eight years ago it was twenty pounds higher than it is today, and that it has been steadily declining. Internally (again, to be honest), I looked at the chart with a degree of satisfaction and accomplishment, cool! I thought.  Externally, though, I immediately started to offer explanations. My weight was high in 2014 because I had been lifting weights and building muscle, but then lost interest in that and the muscle weight disappeared. It declined again in 2018 when my family spent three months living in Europe and walked a ton. Then it declined in 2020 because I got really into cross country skiing… He did not seem at all interested in my explanations. He just said, “Your weight is on the lowest end of what I would consider healthy. Can you increase your calorie intake?”

The way he said “increase your calorie intake” seemed so simple and logical that it almost made me laugh. This guy has no idea, I thought. I mean, sure, I could increase my calorie intake, in theory. But the doctor was coming at this from the assumption that I wanted to increase my weight. He was acting as if, just because he’s the doctor, that I was going to hear him say things like “unhealthy weight” and “increase calorie intake” and stop by the drug store on the way home to get some Ensure or a few pints of ice cream and spend the rest of the day indulging myself on the couch. Gaining weight is not hard to do, and losing weight is very hard. Looking at that chart, I have to conclude that there is more going on than a simple matter of calorie intake.

I looked at the doctor, unwilling to verbally admit what was happening in my mind because I knew it would be alarming. I shrugged. He paused for a moment, looking at the chart on the screen, then looking back at me, before he changed the subject and moved on to ears, nose, and throat.

I knew that my weight had declined, and the truth is it felt validating to see the doctor confirm this fact on his chart, with the official doctor scale, and to hear him express concern. People often comment on my weight (I’m probably acutely observant of comments about weight, but if you think about it it’s kind of amazing how often people say things about other people’s bodies). When my weight is low people have two reactions. Most people tell me I look good, which, I think, is at the heart of this whole phenomenon of eating disorders. For some reason being “at the lowest end of healthy” (or just below it) is considered “looking good” to a lot of people. The other reaction I get is one of concern. That reaction comes from far fewer people - just doctors and family for the most part. Both types of comments are validating, but they have different impacts. The positive comments confirm that I’m doing the right thing and should keep it up. The concerning comments confirm that I’m noticeably thin, and also provide permission to relax and let me know that it will be OK - preferable even - if I am not this thin forever.

I weigh myself first thing in the morning - every morning - after I get up. I started this habit on the doctor’s orders when I started recovery in the late 1990s - to make sure I wasn’t losing weight. It worked for a long time. I would weigh myself to make sure I was heavy enough, and if my weight dropped at all I would simply increase my calorie intake. I had successfully developed that frame of mind. Now, though, and for the past two years, it has been working in the opposite way. If I find my weight is increasing, I’ll add a little to my run, or avoid some of the snacks I usually have in the afternoon. I have a few levers that I can pull to maintain the equilibrium that I’ve settled on, and upsetting that balance isn’t so easy. It’s hard to describe exactly why. Why can’t I just accept the feedback (either from the doctor, or the scale) and increase my calorie intake or reduce my exercise, the way I had done from 2000 until 2020? 

The more I learn about recovery, the more I realize that the reasons people develop things like eating disorders or addictions are deep rooted and complicated. I used to talk about my eating disorder as something that happened in the past, something that I had recovered from. But what I’ve noticed about recovery communities is that people describe their addictions in the present tense. “I’m an alcoholic,” someone in AA might say, followed by “My sobriety date is June 1, 1995”. Someone who hasn’t had a drink in twenty five years will still say, “I’m an alcoholic” not “I was an alcoholic”.  I’m learning to admit that I haven’t recovered from my eating disorder, it’s been with me this whole time.

When I lost weight in early 2020 it was not on purpose. I was actually quite surprised by it. It happened because I had become obsessed with cross country skiing. I discovered the sport and absolutely loved it. Skiing is fun, takes real patience and practice to get right, and is super challenging. But it’s also low impact. I could ski for hours every day and never get sore or injured (unless I fall, which of course does happen). Unlike running, which is brutally hard on your body, skiing is gentle. And it happens to burn a ton of calories. When I stepped on the scale after a few months of skiing and saw how much my weight had declined I was genuinely surprised. But, at the same time, it felt good. It felt so good that I wanted it to stay that way. And then a month later the pandemic hit. That’s when some of the old behaviors started to come back - using food and exercise as a way of exerting control when so many things felt uncontrollable (that’s the simple explanation, and covers part of it, but the reality is much more nuanced and multi-threaded). 

In writing this down, with the intention of posting it to my blog, I’m admitting out loud what I’ve been reluctant to acknowledge - that I’m still in recovery. The state of my relationship with food and exercise is nowhere near where it was in the late 1990s when I was at my bottom. At that point, I remember thinking, no weight was too low. I thought it was impossible for me to overdo it. I wanted to see how far I could go. I was in a state of food restriction and exercise compulsion that was truly debilitating, and that pushed my body past its ability to heal itself from even a minor scrape (my recovery started when I fell walking up a flight of stairs, scraping my knee, and ended up in the ER weeks later because the unremarkable little cut wouldn’t heal and became infected). 

I have too much knowledge, I care too much about my health and wellbeing, and I’m too self aware today to fall to those depths. Instead, I have maintained my weight, as the doctor put it, just on the edge of the low end of “healthy”. I listen to my body, and eat when I’m hungry. I don’t restrict calories, but I am (unreasonably) picky in what I will and won’t eat. Part of that is me letting myself be me (it is very common for autistic people to have strong and rigid preferences when it comes to food), but part of it is also me wanting to maintain and exert control.

What I can say with certainty, right now, is that I’m in the middle of it. I am fully aware and conscious of my behavior, but that awareness isn’t enough to drive change. I haven’t been able to convince myself that I should go back to the weight I was before 2020, that I should listen to my body and run when I feel like it, and not if I don’t. Or to introduce variation for the sake of it, and to avoid overuse injuries. That I should eat what is served to me, and not worry about what’s in it (provided it’s vegan, which is important to me to maintain). I’m not sure where I go from here, but writing it down is helpful, and, I think, the beginning of something.