7 Things They Don’t tell You About Eating Disorders

Ok friends, listen up- it’s NEDA week, and as a person in recovery, I’m legally obligated to discuss eating disorders on social media. So stay and learn some stuff, or if you feel like staying isn’t a healthy choice for you, go do some self care- your mind and body will thank you for it.

Now that I got that part out of the way.

This week is National Eating Disorders Awareness Week, and it’s sponsored by the National Eating Disorder Association aka NEDA. We all spend this week spreading education and awareness, trying to reduce stigma, and sharing our stories. It’s a really positive thing.

I’ve shared parts of my story on here a couple of times before, and since it is List Wednesday, I thought instead I’d leave with you a list of X things they don’t tell you about eating disorders.

*I’d like to put out a disclaimer that all of these things are based on my personal experience, and everyone has their own unique combination of awful eating disorder stuff*

1. Your hair falls out: And it’s not just that. Your skin will dry and crack and bleed, your nails will split and crack, and your body feels like it will crumble at any moment. This was particularly difficult for me, because any sort of moisturizer is sensory hell for me, so I hard to make the hard decision of dealing with the sensory input, or letting my lips and knuckles bleed. I’m a little ashamed to say that I usually chose the latter. On a positive note, in treatment I learned that lotion bars are bearable to use. I wouldn’t say it’s a good experience, but it’s something that I can get through. Burt’s Bee’s chap stick is also ok, plus, it keeps me from one of my favorite stims: chewing on my lips.

2. Eating Disorders correlate with Autism: No one is exactly sure why, but the correlations between Autism and Eating Disorders is really high. There are a couple of theories. The first being genetics, which to me, makes sense. Both Autism and Eating disorders are genetically caused by a slew of different genes, and it seems likely that some of them could overlap. Secondly, social factors are cited. One of the biggest risk factors for an Eating Disorder is social isolation, and I think a lot of us on the spectrum have experienced that. Whatever the cause, the relation is there, and it becomes a big deal when it comes to treatment. The treatment center that finally got me into recovery was able to do so because they took the autism into account, and helped me individualize my treatment. This is not a common experience. More work needs to be done on Autism and Eating Disorders, and more professionals need to be educated to handle the them. Because it turned out that I wasn’t stubborn, I was Autistic, and that made all the difference.

3. You’re never warm: When your body is malnourished, it diverts energy away from what it considers to be ‘non essential life functions’, and one of the first things to go is keeping itself warm. Before I entered treatment, I took multiple showers a day- as hot as I could get them, just to try and stop my teeth from chattering. Three pairs of socks and four blankets could not keep my toes warm. I’ve never known cold like that (and I lived in Upstate New York, famed for its chilly temperatures), and I will do everything in my power to never feel that way again. I still love hot showers though.

4. Re-feeding is incredibly dangerous: It seems so simple, the solution to malnourishment is simply to start eating again- but it’s not as easy as that. Introducing too much food is more than a malnourished body can handle, and if it isn’t done carefully, the patient can get Re-feeding Syndrome. The symptoms range from seizures, to dangerous drops in insulin, to cardiac arrest, and to death. When I got Re-Feeding Syndrome, my phosphorous levels dropped to a dangerously low level, and no amount of supplementing could bring it back up. It did level out eventually, although the daily blood draws scarred many of my veins, which I suppose is a small thing in exchange.

5. It will make you a liar: I hate lying- mostly because my autistic brain took the ‘lying is bad’ thing that gets drilled into us all as kids waaaaay to seriously, but also because I’m terrible at it. And yet, I can always tell when I’m doing badly because lies start coming out of my mouth. Lies about mood, about food, lies that I didn’t plan on telling, but somehow managed to pop out of me. This messes with your relationships in a big way. Not only do you feel badly about lying, but people in your life stop trusting you. Even now that I’ve been in recovery for a few years, I occasionally get urge to lie. This is one of those things that takes a lot of therapy to work through. And goodness knows I’ve had a lot of therapy.

6. You can lose height: That’s right, I said not height, not weight. Eating Disorders are hell on your bones. The lack of calcium makes them soft and brittle, which does more damage than you’d think. While I’m lucky that I never broke any bones, like a lot of people I knew, I still did manage to lose 3/4 of an inch somehow in recovery. In my case, they think it was less of a bone issues, and more of a problem with the soft pads that cushion your spine. If those get dehydrated (and I was definitely dehydrated), they deflate, just like a balloon, and your spine shrinks down. Lucky for me, after many months of drinking water like a fiend, they plumped back up, and I can proudly say that I’m back to my previous 5’7″. Which is good, because it turns out that I’m very attached to my height.

7. It messes with your poop: We’re all adults here, so I’m not embarrassed to talk about how an Eating Disorder can affect your poop. So it turns out that your bowels are a use-it-or-lose it organ, which I feel is something that should be common knowledge. But the fact of the matter is, that if your large and small intestines aren’t regularly used to push food through your system, they stop being good at it. Which can only mean one thing: constipation. Now constipation is pretty normal when a person is re-feeding- your body’s getting more food than it’s used to, and it can’t handle it. Usually this goes away. It may take a couple of months, but most people become regular again. Not me. I don’t really poop on my own. Multiple times I’ve gone to the doctors in intense pain, only to have them tell me that I am literally full of shit. And I think I’ll leave you at that.

So I tried to keep most of this as light fun facts, but as we all know, Eating Disorder are not fun. They’re incredibly serious, and sometimes life threatening, and anyone experiencing one deserves help. I’m going to leave the NEDA helpline at the bottom, and a link to their screening tool. If anyone has questions about Eating Disorders, treatment, or anything else, my email address is in my About page.

NEDA Helpline: 1-800-931-2237

NEDA’s Eating Disorder Screening Tool

Also, a dear friend of mine is heading up a great project that’s trying to change the way that we talk about mental health. Check it out over here!

 

Candidly Mental

This post discusses Eating Disorders, Suicidal Ideation, and Self Harm. If you think reading this might be harmful to you, please stop now, and please take care of yourselves my friends. 

There’s nothing like a therapist to start you thinking about how things were. Because I don’t know about you, but for me, mental changes come so slowly, that it’s hard to remember how bad things were at the beginning. Or the middle, for that matter, as I didn’t start seeing this therapist until my mental state had already improved by leaps and bounds. But even then, me, my team, and my family were trapped in a cycle of putting out fire after fire, trying to keep me stable, and while logically I know that things are different now, it doesn’t always feel that different. More importantly, I don’t feel that different. But I am, and I can prove it.

Three years ago, I was low, lower than I think even I knew. Put it this way- on a scale of 1-10, I was a negative two. My life revolved around the amount of calories I took in, and the amount I could manage to get out. My brain actually turned it into a kind of math puzzle. If calories (C) equals food minus exercise, how many miles will you have to walk before you’re allowed to eat dinner? This equation became my whole life. Obsessing about calories in verses calories out, slowly decreasing my portions, and pacing. Endless pacing. I had shoved out my life all the things that I loved, and I didn’t even know it, because the numbers were all that matters.

The one other thing I did have time for was hurting myself. Not that restricting and over exercising wasn’t hurting me, but that wasn’t really why I was doing it. I knew enough about the body and nutrition to know that technically what I was doing was harmful, but it was more of a secondary thing. Self-harm was different. It was conscious and purposeful, and as confusing as it sounds, back then it was the one bright part of my day. When it came to restricting and exercise, I could never do enough to make my brain happy. If I set a goal, I wouldn’t feel good even if I competed it. I wouldn’t feel good even if I surpassed it. How depressing is that?

I worry when I talk about self-harm, because I don’t want to romanticize it. It’s easy to avoid making an eating disorder sound good, because when I was restricting, all I experienced was misery. I will tell anyone who will listen that eating disorders are not cool, they’re not sexy, or glamorous, or anything but a life full of desperation and sorrow. I struggle doing the same with self-harm, mostly because given where I was at the time mentally, I needed it. Please note the past tense, because now that I have a therapist, and meds that work, and a collection of coping skills, I don’t need to hurt myself anymore. But I did then. And I didn’t care about infection, or about causing more harm than I intended. I certainly didn’t care about scars, although I wish that I had, because mine lead to a lot of awkward questions now.

It is impossible to sustain this sort of life, and when I finally got help, I was circling the drain. Something I’ve since learned is that when you want to stop a behavior but can’t, you’re way past being able to fix it on your own. I spent about a month trying to deal with it myself. I’d do okay for a day or three, but eventually everything would come crashing back down, worse than before. So finally, after almost of year of living a secret life, I told someone. You’d think that something so important would be imprinted in my brain, but to be honest, I don’t remember it. This is probably a testament to how malnourished my brain was, and how disconnected I was from reality, but it happened, whether I remember it or not. I don’t remember how it went, but I definitely remember what happened next.

I’m not going to go into specifics about treatment, mostly because for the first year, it was a complete wash. Undiagnosed autism made the standard treatment model ineffective, and after therapist after therapist told me that I was stubborn, and rigid, and unwilling to change, I started to believe it. I would do well for a few weeks, only to relapse the minute I was given a little freedom. This happened over and over, and this hopelessness that I wasn’t good enough to get better, and the loss of my only coping skills, dropped me into a pretty dark state of mind. The feeling started slowly and crept forward, the feeling that I would never get better, that I would be stuck in a body I hated, that I was hurting the people that I loved. It whispered in my ear that maybe I wasn’t meant for this world, and maybe it would be better without me. This is a dangerous pit to fall into, because often times, in trying to climb out, you end up digging deeper instead. Instead of paying attention in treatment, I was daydreaming about what the world would be like without me, and how I could make it happen. It didn’t happen. Clearly, I’m still here. But it took several hospitalizations and some new diagnoses to keep me here.

Recovery is a strange beast. In the beginning, it occupies your mind every moment of every day. You go around and around, questioning if recovery is worth it, if you can do it, or if you even want it. And everyone has a different path to recovery. Some people can recovery on their own, some only need one round of treatment, and there are chronic types like me, who need to do it over and over again before we can get it right. I can’t tell you what happened when I truly got it right. I’d like to stay the stars aligned and everything I learned came together in one magical recovery moment, but it wasn’t like that.

In order for recovery to work for me, I had to figure out how to replace restriction, over exercise, and self-harm in my life with something healthier. Even more, I had to accept one thing that no one will tell you about recovery- those healthy replacements? They’re never going to work as well as the unhealthy ones. And you’re going to have to keep making all those healthy decisions for the rest of your life, and that’s really hard. I’m stable enough to make good decisions maybe 95 percent of the time. Even in good times, I’m not perfect. But if something terrible happens? If my meds stop working? I don’t know if I’ll be able to do the right thing. I hope. But I’m not sure.

We all change throughout our lives. Some people go through more drastic changes than others, and I have no problem saying that I’m one of those people. In just three years, I’ve gone from the desperate, disconnected person who was barely hanging on, to the person my therapist was talking about today. I take my meds, I follow my meal plan, I use my coping skills. I connect, not just when I’m in trouble, but for the joy that is being part of a community. I am neutral on my own existence, which might not sound like much, but is huge for me. I still don’t feel very different, and I don’t know if I ever will. But I don’t think that’s the point of recovery. As long as I feel like me, and as long as I’m living the life I want, past me is just that- past.

How To Meesh Redux

My blog name, Stimtheline, was created to reflect the fact that I walk, and frequently cross over, the line between Autism and Eating Disorders. I spent almost two solid years in Eating Disorder treatment, and for the first year, we didn’t know that I was Autistic. Once I was diagnosed, everything about my treatment changed, because your typical one size fits all Eating Disorder treatment just does. not. work. for. me.

My first time in treatment after the Autism diagnosis, my wife created a document called How to Meesh for my team, which included a psychiatrist, a therapist, and a dietitian, so they’d have a better chance of success in working with me.

I thought I’d share it with you, as it’s a kind of interesting look into my brain, and it also shows how much eating disorder treatment needs to be altered to ensure the success of autistic patients.

How to Meesh

Meesh is very literal.  She will take the most literal meaning from anything that is said to her, and does not catch many non-verbal cues or implied intent.

This means:

  1. Please try to speak in complete sentences or phrases. She gets easily lost when someone talks for an extended period of time, or does not make a clear point.
  2. Be blunt /get to the point – She does not catch subtle hints or direction.
  3. Please be prepared to ask a lot of questions! Meesh does not often volunteer information, and does better with directed questions, and help making plans or lists.
  4. Please Listen! If something is bothering Meesh enough for her to bring it to your attention, she will be very frustrated if she feels like she wasn’t listened to or heard. One of the things she has worked on since her last ERC stay is “using her voice” but she still has a very hard time expressing how important things might be to her. (Jess will reach out if Meesh has tried, but there is a problem that isn’t being addressed)
  5. If you want her to do something, she needs you to clearly tell her your expectations.
  6. Tasks and goals that are general or broad tend to confuse her, she needs them broken down into individual steps or actions, otherwise she will not understand how to do what is being asked.

WORDS MATTER!

“Are you willing to?” Instead of “Do you want to?”

Meesh will respond to the literal meaning of words like “want to” or “willing to”.  This often means asking her the same thing multiple times, if someone starts asking if she wants to do something (this generally has implied intent), but you will get a better answer asking if she “will” do something, because she rarely feels that she “wants” to do things that she finds unpleasant or tedious.

“Experiments” instead of “Challenges”

We have found that rather than talking in terms of “challenges” to behaviors or meal plan changes, Meesh responds really well to “experiments” and the idea of setting up a scientific-like approach to trying a new strategy or approach a couple of times and reporting back on the outcome.

“Impressed” instead of “Proud”

Meesh does not seek much approval from others, and she has a negative reaction to people who congratulate her or tell her they are proud of her for things that she doesn’t believe are actual accomplishments, like doing things that are part of her normal daily expectations from her team.

Signs of overstimulation:

  • Stims like rocking, shaking head, saying “no no no no no”
  • Jumping at every noise (hyper alert)
  • Can seem completely unaware of her environment.

 

First Line Solutions:

  • Leaving the room if a group of people is too noisy or otherwise contributing to her sensory input in a negative way.
  • Music through her headphones.
  • Ice pack on chest or neck.

If first line solutions aren’t enough:

  • Dark quiet room
  • Weighted blanket or lap pad (she has a lap pad with her)

If Meesh isn’t given the opportunity to avoid overstimulation, she will have a meltdown, which can involve crying, yelling, extreme sensitivity to touch and sound, and can possibly result in self harm.

For Meesh – Anxiety and Overstimulation are sometimes linked.  If her anxiety levels are high, she has a tendency to be more sensitive to sensory input, and can become overstimulated.

Autism vs. Anorexia

Autism

  • Sensory issues with touching foods that leave anything wet or sticky on her hands when she is unable to immediately wash it off. (This makes sandwiches and wraps challenging). This also leads to her using her napkin to clean hands after each bite if she is trying to use her hands.

 

  • Foods with “grainy” textures are very problematic – for Meesh this means foods like applesauce, couscous, gritty sauces, multigrain bread.

 

  • If the food (in treatment) is not what is scheduled, she will refuse to eat it, or melt down, possibly both.

 

  • Repeated foods, meaning having the same thing twice on the same day, is very difficult for her, even when not struggling with the ED.

 

Eating Disorder Related (there is overlap)

 

  • Some of the food related rigidity is ED related. However, she does have a lot of texture related preferences that are more Autism. If she’s talking texture, it’s less ED related.

 

  • Precise attention to time of meal. She will only allow a 15 min variation from the “scheduled” start time of a meal at home, or she will skip the meal.

 

  • Obsession with the idea that food “artificially affects her weight” because food has mass, and by eating it, she is adding that mass to her body.

 

We implemented these during my last stay in Higher Level care, and it was incredibly successful! I left Higher Level care in August of 2016, and I’ve been completely Outpatient since March of this year. Recovery with Autism is still challenging, but I’m stable right now, so my team is happy. And so am I!

I’m basically an Autism and Eating Disorder expert at this point, so if you ever have any questions, please contact me, and if I can’t help, I can help you find it. Eating Disorders are serious business, and there are more than just Anorexia and Bulimia. Binge Eating Disorder and Avoidant Restrictive Food Intake Disorder (ARFID) are just as deserving of help and recovery.

The National Eating Disorder Association (NEDA)

BEAT Eating Disorders

Gratitude Gremlins

So I’m going to need you to stick with me when I say that I have Gratitude Gremlins. The definition of a gremlin defines it as “An invisible being, that causes problems or difficulties”. And let me tell you- gratitude definitely causes me difficulties.

It’s not the concept of gratitude that I struggle with. I’ve lived through 29 thanksgivings, with their required recitation of things we’re thankful for. I’m pretty sure for at least 25 of those, I’ve been grateful for my cats. Which says a lot about who I am as a person.

My problem is gratitude within the scope of mental health. Starting off my day reciting 3 things I’m grateful for seems forced. I think gratitude is much more authentic when it comes spontaneously. In fact, I would go as far as to say that pushing yourself to rack your brain for something you’re thankful for kind of defeats the purpose of the exercise.

I prefer to express my gratitudes as they come. “I love your hair!”, “This pie is delicious!”, “What would I do without you?”, “You’re hilarious, I love it!”. “I love you”. When I think something positive about someone, I tell them. It’s good for both of our souls.

That being said, I am thankful for many things, and I’d like to share a few of them with you.

  • The Cats- they keep me warm, give me someone to talk to, and they make me laugh.
  • Jess- my wife, my humor twin, my soulmate, my interpreter to the world.
  • My team- the doctors and therapists that keep me going.
  • My recovery- my life is so much fuller when it’s not filled with an eating disorder.
  • Coffee- for reasons I should not have to explain.
  • My Dungeons and Dragons group- they provide socialization and epic adventures.
  • The kids I volunteer with- they’re funny and unpredictable, they keep me moving!
  • My City- for giving me opportunities to get out and do stuff.

Honorable mention includes the Gluten Free cinnamon buns we made, they were amazing!

I hope all the Americans here have a happy Thanksgiving, and to everyone else, Happy Thursday! As always, I’d love to hear about your Thanksgiving traditions, favorite foods, and what you’re thankful for!