I think that if you’re suffering, you deserve to feel better. There’s always going to be someone worse off than you but that doesn’t take away the fact that you’ve got whatever you’ve got going on. Many people with disordered eating have thought distortions that minimize their problems. Your problems are always worth solving. Your family and friends are there because they want to support you. Wouldn’t you want to support them if they were in a similar situation. Don’t discount yourself. Treat yourself how you’d treat your friends. Find compassion for yourself. Wanting to get better is really great. You may have an eating disorder, you may have disordered eating that could develop into an eating disorder and you may have disordered eating that just makes you miserable or prevents you from fully engaging in your life. In any case, reaching out to someone is really important. You aren’t a burden. You are a valued member of your family and your community, and that’s a totally fair thing to do.
another person with ehlers danlos and an eating disorder?!??! i thought people like us were unicorns!
I think that I’ve met about seven people through tumblr who have both! I’ve always sort of wondered if my late diagnosis led to me feeling at odds with my body and trying to control it, since it can feel very out-of-control. It was like… why can’t my body do what everyone elses’ body does?… why does my body always seem to cause me pain? I think some of that helped contribute to my eating disorder because I wanted some sort of control over my body.
Thank you for being so considerate in your question. Body checking is a repetitive behavior that can take a lot of different forms for different people. It’s usually a behavior that “checks in” on the body and is used for comfort or judgement of someone’s body. I don’t want to trigger anyone by describing what body checking is for me but commonly described behaviors include weighing, measuring, examining in the mirror, or feeling the body in particular ways. These behaviors have been described in similar terms to certain OCD behaviors. It’s kind of hard to explain but doing body checking is comforting to me and can also send me into a panic depending on how the checking goes. This means that it can sometimes make you feel good, but when in you’re in recovery and moving in a positive direction, something that you once found comforting now upsets you all the time. It’s something that I think is very important to address in recovery. I’ve found that certain types of body checking were harder for me to kick than others. I can stop myself from weighing by not having access to a scale, but things like touching are harder for me to kick. And the weighing is still an ongoing struggle. I hope this helps and I can answer more specific questions off anon. <3
I have a number of responses to this, aside from the obligatory eye roll.
- I have requested numerous times that people not comment on my body. Please be respectful.
- This is just your opinion. See above^
- I have never claimed to be “recovered” only recovering. It’s an ongoing process. And I’m the one who gets to define recovery for myself, just like I offer you the same courtesy. You may think that my assessments are incorrect, but it’s not your job to judge that.
- Eating disordered is not a body type. You can’t tell if someone has an eating disorder from looking at them, so why would you assume someone was not recovered by looking at them? You’re not my doctor, so you really don’t know much at all about my body. You’re just looking at a couple of pictures! Eating disorders are not the only reason why a person might be thin, even if that person has an eating disorder history. How would you judge my health based on a photo? I don’t feel like I should justify my current body.
- I feel like the focus on thinness in terms of recovery takes a lot away from folks who don’t have a lot of external indicators of their suffering. Like, if I was b’ping every day and going through hell but at a higher weight, you’d probably not be sending me this message, whereas I’m pretty stable right now and I’m getting this sort of message. And that’s really uncool.
- It sounds like you feel threatened or upset by your perception of my body or are comparing to my body. I’d urge you to consider why you’re feeling this way and redirect your attention to yourself.
My pain clinic nurse weighed me “wrong” (in sneakers and jacket, not light clothes or gown without shoes, and then rounded down arbitrarily to account for it).
And that’s okay. It didn’t feel okay at first but I wasn’t about to freak out at a nurse who had no idea about eating disorders and “weigh-in protocols.” It’s okay even though it’s permanently written somewhere as part of my records.
Numbers don’t have to be “real” because I’m not a calculator or a math problem. There is no “ONE REAL TRUE WEIGHT.” My weight is not a higher power or a truth of the universe.
The Scale Smashing Was A Success!
My friend B and I hiked out to Walden Pond and climbed down some rocks to the beach. It had just started to snow. I had covered the glass of the scale in Thoreau quotes the previous night. In order to smash it, we wrapped it in a sheet, put it inside a canvas bag, and put the bag in a backpack. Then we smashed the heck out of it on the rocks.
Remembering this today for some reason.
Yesterday I accidentally found out my weight because the nurse left my chart open next to the bed. I am realizing that not knowing is unpleasant but knowing seems to trigger more thoughts of using behaviors. It doesn’t even matter if the number is lower or higher; the effect seems to be the same. B is mad that I looked.
I went to the Apple Store to get everything on my laptop fixed, since the warranty is expiring in a week and they are going to have to wipe my hard drive. I have it backed up and hopefully that will work but there is a part of me that is totally terrified of losing my body-checking photos. But if they were gone they would just be gone and maybe I would be at peace with that.
B and I talked and I had an idea about making progress because I feel like I really just want to kick this eating disorder out of my life. I am going to try to go a week without doing any fat talk/weight talk/body talk. He’s involved because he’s the one who usually has to hear me vocalize what’s in my head. I have a hypothesis that not bringing these thoughts into the world might be helpful at this point because it just tends to escalate once I start saying it out loud. Maybe this will be a colossal failure and trying to keep them in my head is awful and will make everything worse, but it’s worth a shot. We are doing a one week trial of this and we are going to see how it goes. I assume that I won’t keep a strict rule like this forever, but maybe a break from it will help break the cycle. Anyway, I don’t know how it will go and I’m not suggesting everyone else tries this. I’ll let you all know how it’s going but I will not be fat talking/weight talking/or body talking this week on my blog either.
I did a lot of things that were important to do but potentially triggering. I had a few of my friends come over to see if they wanted some clothes that I was giving away since I’m cleaning out my room in order to move at the end of the month. Some of my older pre-relapse clothes were too big for one of them. It was tough.
I also had a rough conversation with a friend about her eating, nutrition, and being undernourished. That was tough too but it was important to do and I feel like I was able to do it and be okay today.
I feel good about these things, even though they were tough and it was a risk to go through with them.
Recovery means different things at different times.
Right now recovery means that I realize that I don’t know how to be a whole person without someone else and how to be in a relationship healthily.
How does everyone else even know how to not dissolve into this? This is the only way I ever remember being. How do I change?
Isn’t it pretty disordered for us to care so much about how much everyone else is eating or is being forced to eat? I know the eating disorder cares deeply and it can be really easy to be pulled into when it becomes an intellectual debate. If someone else’s intake posts are going to make you upset and have you question whether you’re recovering “correctly,” then you may wish to reconsider the material you view online. I have mixed feelings about telling people to trust their medical professionals without question because I’ve received some appalling and harmful medical care for my eating disorder over the years, but at the same time no one’s blog should be telling you what to eat.
Making your own judgement calls based on scientific data is tricky for those without a high level of scientific literacy and eating disorders can convince us to hear what we want to hear. I feel like the medical system needs to overhaul the way they treat eating disorders and use a more evidence-based approach, but where does that leave everyone else in the meantime? Care can often be spotty. My ideal situation ended up being in a good relationship with a very competent nutritionist who was just as much of a skeptic and a scientist as I am. But that’s extremely hard to find (it took me four failed nutritionists) and doesn’t work for anyone.
I know that with recovery, people often feel like they have to throw themselves headlong into what they’re doing because questioning it would mean opening up a door for the ED thoughts to get in. It becomes deeply personal because criticizing someone on a personal level for what they’re doing can really shake the forward momentum that they’ve built up and question what they are forcing to be their core beliefs in order to get through the day.
These are just a few of my thoughts on everything.
I’m not sure why I would have any thoughts or opinions about them aside from compassion and wanting them to be able to get help and support?
I feel like it must be especially challenging to get support when you don’t fit people’s ideas of what eating disorders look like or who suffers from them. There are a lot of different stereotypes that people have about who gets these disorders, as well as how their disorders play out. There are a lot of cultural complexities that come into play as well as clinicians who may have their own biases. People can be neglected and not receive the treatment that they need. I think that people who suffer from eating disorders and who don’t fit the stereotypes deserve the support of the entire community, as well receiving support for having their voices heard. Adding these stories to the narrative of the understanding of eating disorders is absolutely critical.
Yes, my mother does.