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 7 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 had 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 chapstick 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 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 ‘nonessential 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 too 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 bad 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 the 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 issue, 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 Disorders 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!


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