Well, guess what. I've changed my mind. Sort of.
I still feel some of the stuff on the blog was too private. Well, those might be the wrong words. We all vary in how much we're willing to share. I'm usually willing to share A LOT. I'm open and I'm honest. But even I have my limits.
I've deleted all my posts except one. This one I've decided to share.
Note: Since starting this in May, I've added many items to it, and will probably continue to do so. I think I shall start re-dating it when I make the changes.
Here are some things that people have said to me, and some things I imagine people might be thinking. I'll star the things that were actually said to me.
This is my chance to respond because often I fail at the time to say what I needed to say.
1.* You didn't have an eating disorder. Wrong. I never had clinically defined Anorexia or Bulimia, but I DID have an eating disorder. What I had is called EDNOS (Eating Disorder Not Otherwise Defined) I've also seen it called disordered eating. I'm pretty sure those names describe the same thing.
My symptoms (for those curious):
a) an obsession with losing weight...wanting to lose more and more weight. Even when I was underweight, I still wanted to lose more.
b) counting calories. I'd weigh all my food even fresh fruit and vegetables.
c) I weighed myself several times a day
d) I rewarded myself based on low numbers on the scale. This reward was taking a day off my diet. On these days, I'd eat excessive amounts of calories. I'm not sure it would be classified as binging though.
e) My frequency of bowel movements greatly decreased. Did I worry about my health? No, but I wanted to shit so the scale numbers would be lower. To help with this, I drank laxative tea. It didn't actually help me much though.
f) An obsession with food. I know a lot of people love food. There's the whole foodie thing. My obsession went way beyond what is normal and healthy. Food became the center of my happiness. I'd spent hours looking at menu websites. I'd take a break from my oh-so-reasonable-diet when we went on holidays. All I really cared about on these vacations was eating. If food wasn't involved, it was boring to me. You know how some people can't have fun if alcohol isn't involved. I couldn't have fun if food wasn't involved.
g. Obsessive and excessive exercising. I wore a pedometer and walked pretty much all day--rarely sat down. At one point I was forcing myself to walk 8-15 miles a day.
2.*You have so much willpower. I wish I had your control. (that was said to me several times while I was losing weight...maybe not in those exact words though) But no. I didn't have control. I was completely out of control. The only way I could control myself around food was to make VERY rigid rules. Without these rules, I felt lost and out of control. I did have willpower in following these rules. Fortunately, I eventually lost that willpower. Otherwise, I might be dead or very physically damaged right now.
3.* Well, everyone probably has an eating disorder then! (This was said to me recently, and it's also something I told myself when I was in the midst of it all) The answer is probably not. Every single person does NOT have an eating disorder. I'd say almost every person participates in unhealthy eating and dieting sometimes. That doesn't equal an eating disorder. That being said, I think eating disorders are very common. I think many people have seriously dangerous relationships with food. This doesn't discount the illness though. If someone has asthma it does not get any less debilitating or dangerous just because a lot of other people have it.
4.* You didn't have an eating disorder. You're just very determined. You get very passionate about things. Remember how you used to be obsessed with [fill in the blank] and now look how you are with Australia. Yes. I am very determined. I get obsessed with things. And this might be part of the reason I have an eating disorder in the first place. I don't know if these traits caused the eating disorder. But I do think people who are very determined, perfectionists, and obsessive are the ones likely to end up with eating disorders. Is it bad to be this way? No, I love that I'm passionate and have determination. But these things ARE bad if it's around something unhealthy. I have a friend who is "addicted" to cross-stitching. She loves it. She spends a lot of her free-time doing it. She loves talking about it. She sets goals for herself. I think this is awesome. It's healthy. It's FINE. What if someone else had an obsession with sticking plastic bags over their head so they could feel lightheaded. Is that okay? No! There is such a huge difference between the two.
I am very passionate about Australia. I think about it. I read about it. I make rules for myself. I tell myself that everyday I have to do a post. I work five posts ahead to make sure I don't get behind. Is that a little rigid? Yeah, but it's fine. I think it's good in a way. I'm learning. I'm feeling productive. I'm not doing anything to harm myself.
Obsessing about food, weight, and exercise to that degree is NOT healthy. It's NOT okay.
5. * You Don't Have An Official Diagnosis From a Doctor (not said in those exact words) Right, but I don't need validation from a medical professional to know that something was/is wrong with me. I may not have a medical degree, but I do have enough intelligence to read a list of symptoms/signs and know which ones fit what I was going through. It would be different if there was a blood or urine test involved here. I can't diagnosis myself with cancer, AIDS, Diabetes or strep throat. I need a doc and lab test for that. But with eating disorders, the patient CAN diagnose themselves. I think it's like pregnancy tests though. There are false negatives. There are no false positives. What should always be believed and taken seriously is someone saying I have an eating disorder. What should be questioned and not easily believed is someone in denial saying I don't have an eating disorder. Now I'm not saying every thin and/or dieting person has an eating disorder. But if someone is rapidly losing weight and they deny there's a problem....I'd take what they say with a grain of salt.
6. * I'm skeptical about you saying you recovered on your own. It's not easy to gain the weight back that. It takes medical intervention. (said to me, but not in those exact words). No, I didn't need intervention of re-feeding. I probably would have if I had full-blown Anorexia. Some people eat so little that their bodies forget how to eat. I never stopped eating. At one point, my self-assigned calorie intake was much lower than the minimum recommended. But I would take breaks from my diet and eat an excessive amount of food. My body never lost the ability to eat. However, all the dieting did mess up my metabolism. So once I stopped the dieting, I gained the weight back very fast.
7. * Think about what you're doing to Jack This was said by someone who really meant well, but it's one of the cruelest things you can say to someone with an eating disorder. Is having a parent with an eating disorder healthy for a child? No! But we know this already. We already have enough guilt about it. We don't need outsiders to add to it. When I'm having one of my really shitty moments in life--when I'm feeling hurt and worthless...when the eating disorder is creeping back into my life, the meanest thing someone can do is bring up my child. That just adds to my feelings of inadequacy. It makes me feel even MORE worthless. When I'm feeling horrible, I need love and compassion. I don't need guilt trips. And by giving me one, you're helping neither me nor Jack.
8. You just want attention. Wrong! I don't just want attention. I want many things besides that. I want compassion. I want someone to hug me when I'm crying. I want someone to listen to me when I need to talk. I want empathy--or at least sympathy. I want to be BELIEVED. I want to be taken seriously. I want validation from the people I love. Is it wrong of me to want these things? I don't think so.
9. There's nothing wrong with dieting and exercising I definitely agree with the exercising part. I sort of agree with the dieting part. I think diets are okay for people who are obese. Sometimes people NEED to lose weight for health reasons. I do question the helpfulness of diets though because so many people gain the weight back. When I went on my very restrictive diet, I was NOT overweight. My weight was perfectly healthy. I wish I had been smart enough to say Your weight is fine. You don't need to be on a diet. Try to love your body for what it is. I also wish other people had been smart enough to say that to me. And you know, a few people did say something once I had lost a lot of weight. But they were in the minority. Most people seemed to think it was admirable that I was going from a healthy BMI to an underweight BMI.
Exercising is great. I recommend it to everyone. What I've been reading about regarding exercise and eating disorders is this: Healthy people exercise because they want to improve their health, have fun, and keep their weight at a reasonable level. For people with an eating disorder, it's all about burning calories. And you can never burn too many calories. When I was in the midst of my eating disorder, I would go to websites and read about how many calories were burned by various activities. I obsessed over this. I found out that standing burned more calories than sitting. So, I stopped sitting as much as possible. I stood all the time. Then I decided I should just walk all the time. I walked almost constantly. I tried to sit still as little as possible. I remember being upset because I had an old high school friend visiting our house. I didn't like her being at my house because I couldn't exercise while she was there. I wanted her out of there as soon as possible so I could start walking again.
I remember being conflicted about swimming. I would have to take off my pedometer and stop walking to do that. Since I had rules that I had to walk a certain amount of miles before eating again, I struggled to decide whether the time in the pool counted or not. Did swimming count as my exercise, or did I still need to get in all those steps?
10.* What can I do to support you? You can listen to me when I need someone to talk to. You can ask me how I'm doing. There's no need to say Hey, How's that eating disorder going? But you can show that you know I'm going through a hard time. Two of my best friends wrote me emails when I was having the relapse issues. They said something very simple, but it was so loving and compassionate. I don't remember their exact words. I think maybe they just wrote and said Hey? Are you okay? That meant a lot to me.
Sometimes I DO want to talk about the eating disorder though. If I bring it up, please don't try to change the subject. If there's a truly valid reason why you don't want to talk about it (maybe you had an eating disorder yourself, or someone you loved was hurt by one) please just be open and say something like I'm sorry. For personal reasons, I can't be there for you regarding this. But I'll be there for you with other stuff.
Anyway....there's other stuff you can do for me.
You can help me focus on my self-esteem and truly important aspects of myself, instead of focusing on what I eat or what my body looks like. Please DON'T give me dieting and exercising advice--even if it's healthy sane advice. You may be reasonable, but my eating disorder is often not. When I hear someone giving me eating and exercise advice, my little inner voice says. See? I told you. They all think you're fat. Ignore their advice. They don't know anything. Follow MY advice and we'll have you looking like Calista Flockhart.
I don't need dieting, nutrition, or exercise advice. I'm well-educated and literate. If I need help in that regards, I can do my own research.
Basically you can be my friend. You can share my joy and my despair. And you can share your joy and despair with me. That's what friendship is about. Friends laugh together and they cry together.
11. So, we have to walk on eggshells around you? No. Well, maybe. People with eating disorders are easily triggered. There's no way you can completely avoid saying something that might make me go back to having an eating disorder. Sometimes just seeing a thin person is enough to get me going. Going to the grocery stores and seeing all the weight-loss headlines on the magazines is sometimes enough as well.
But there are things you can avoid saying around me--not just for my sake, but well....they're just not really good things to say around anyone.
There's no need to talk about the weight of various people (celebrities or people you really know). I don't need to hear (and you don't need to say) Have you seen how much weight she lost? She looks so great! Or She's really gained weight. She's sure letting herself go.
There are more important and interesting things to talk about. At least I think so.
Also, it would be nice if you refrained from giving people weight insults or compliments in front of me. Even if the comment is not directed at me, I'm still wounded by it. And who knows, you might also be hurting the person you're speaking to.
12. * Don't Worry. We bought special food for you. You don't have to eat the dessert we're eating. We have fruit for you. Hello?! I have an eating disorder. I have TOLD you I have an eating disorder. I am trying to get OVER my eating disorder. I don't need you trying to push me back onto a diet.
13. * Are you going to have some cake, or are you still on that diet? Hello?! I have an eating disorder. I have TOLD you I have an eating disorder. I am trying to get over my eating disorder. Please don't say things like that. It makes me feel very self-conscious about what I'm eating. You're eating cake, right? So why shouldn't I? There's nothing wrong with eating yummy junk food once in awhile. Please don't make comments on what I'm eating--please especially don't imply that you think I've eaten too much.
14. * You HAD an eating disorder. You're okay now. I might be better than I was before. I'm not cured. I'll never be fully cured. I'll have my ups and downs....hopefully more ups than downs.
15. * I just want you to be happy. Thank you. I want you to be happy too. But neither you nor I can be happy ALL the time. So when you say that to me, what I need to know is this. Do you mean you want what's best for me? Or do you mean it makes you uncomfortable to be around people who are sad? Do you want me to BE happy. Or do you want me to ACT happy? If it's the former, you'll get your wish....some of the time. If it's the latter, sorry no. I'm NOT like that. If you want fake people who are happy all the time, go elsewhere and find them.
16. How did you manage to get well? Well, to be honest. Right now (at the time of writing this) I'm not exactly well. I've had multiple relapses over the last few weeks. The good thing is I keep pulling myself out of it. This afternoon I managed to pull myself out of a relapse that lasted six days. That's my longest relapse yet. How did I pull out of that one? My husband gave me huge amounts of comfort, and a friend wrote me a very loving and supportive email. Sometimes it's as simple as that.
When I had an eating disorder, several factors contributed to me getting better:
a) a meddling bitch that I mention below in the next section
b) My sister who is a nurse and recognized the signs of an eating disorder. She was brave enough to approach me about it.
c) an editorial by JK Rowling.
d) simply getting tired of all the dieting, measuring, and exercising
e) realizing I was setting a bad example for my young adorable nieces, and my own son.
f) understanding that being thin didn't make me a better person.
g) realizing my metabolism was so screwed up. I needed to start being healthy and get it back on track.
17. * Have you lost weight? You look skinny! (not said to me, but said right in front of me) Hello? Did you forget I have an eating disorder? Did we not recently talk about how I'm struggling to not be obsessed with wanting to be thin again? Why in the hell would you compliment someone for thinness in front of me? All that makes me think is if I go back to my eating disorder maybe I'll get such compliments from you as well. It's bad enough to mention someone's weight loss in front of me, but to treat it as a great accomplishment. Really. Unbelievable.
18. There's strong evidence that eating disorders are genetic. It's not anyone's fault...not the victim's, not the parent's and other family members, and not society. (I've seen this on websites, and have been in the midst of debates/discussions about it). Well, guess what. There's strong evidence that musical talent is genetic as well. Some people are born with certain traits that make them more likely to excel with instruments, singing, etc. But they need the right environment and support for the talent to develop. The same goes for eating disorders! There might be genes involved, but that doesn't exclude environmental factors from playing a part.
19. Eating Disorders are not a choice (I saw this on a website recently). I understand the purpose of such a statement. It encourages sympathy for people like me. And I'm NOT saying we shouldn't have it. I NEED sympathy and I need support. But saying eating disorders are not a choice is a dangerous lie.
I made the choice to have an eating disorder. Now certain genes of mine might have pushed me to make this decision. Certain aspects of my life pushed me to make the decision. My relationship with those around me pushed me to make the decision. But ultimately it was MY choice. I know it was a choice, because I eventually made the choice not to have an eating disorder. And unfortunately, I keep having to make the choice again. I very often want to go back to having an eating disorder. I want to be super thin again. I want to get tons of compliments again. I want the attention. I want that sense of control. It's all so tempting, and I have to fight sometimes not to go back to it. But it IS in my power to say no more!
When I had my brief relapse, I read stuff that made me believe that none of it is my fault or my choice. I have an eating disorder. I can't help it. I think it was a horribly dangerous mindset. In some ways, I felt it was just my destiny and there wasn't anything I could do about it.
Maybe it would be better to say that it's not my choice to have the traits that make me susceptible to having an eating disorder. But it IS my choice whether I actually have an eating disorder. It's like an alcoholic is not to blame for having an addiction to alcohol. But it IS his choice whether to stop drinking or not.
When someone has an eating disorder, there are certain mindsets that are hard to fight. I do want compassion for this, and I want encouragement to do the right thing. But in the end, I need to believe that I DO ultimately have control. It might be a struggle, but such is life.
20. * If you have a relapse, how can I help you? You're just going to deny anything is wrong. You're going to get mad at me if I say anything. (said, but not in those exact words) You're absolutely right. If I have a full-blown relapse, I will deny anything is wrong. If you keep bothering me, I might get angry with you. I might avoid you. But deep inside I WILL appreciate you trying to help me. I might not appreciate it then, but I will appreciate it one day.
When I had an eating disorder, there were a couple of people who got on my case. I got annoyed at them. I got very angry at one of them. I verbally attacked one of them. But later we apologized to each other and became blogging friends. I will add though that this person who approached me was a total stranger. I felt she was invading my business. Now I'm grateful to her. She saw what my family and friends didn't see. She said the things I needed to hear...the stuff that no one else was saying.
I don't know if I'd be as mean and angry towards a friend or family member.
In the end, it is MY responsibility to get well again. No one can force me to be okay. I have to make that decision by myself. I have to pull myself out of it again. But it is easier to do all this when I have people pushing me in the right directions.
BTW, It won't help to tell me I'm losing too much weight or that I'm looking too thin. If the eating disorder is back fully in my life, I'll take it as a huge compliment and it might make things worse.
The best thing to say? I've noticed you're doing unhealthy things again. What's going on in your life to make you want to be this way again?
In the end, eating disorders are really not about food and body shape. They're about being sad and empty...they're about feeling out of control. They're about feeling worthless. They're about feeling we DESERVE this self-abuse.
I know it's scary to approach someone with a problem. It's hard. But sometimes being a true friend is not about doing the nice thing. It's about doing the helpful thing.
If you have a friend with an eating disorder, drinking problem, drug problem, or any other type of self-harming issue...don't be the one who laughs with them and makes excuses for them. Be the annoying interfering one.
