Spreading The Word and Maybe Some Comfort

We are a few days into NEDA week and I really hope you all are participating by spreading the word, but also by doing things that make you feel good about YOU.

Anyway, as I walked into the office yesterday literally 2/3 of the staff was wearing purple.

No one knew it was NEDA week, or that purple was the color of support for the cause but I did make them aware.

“I am so excited you all are wearing purple today!”

I got a bunch of blank stares.

“It’s National Eating Disorder Awareness Week, and since that is the representative color I will be wearing it everyday.”

They all looked at my quizzically, but interested.

“We had no idea! But now I am so glad I chose this sweater!”

I love the women (and men) I work with because they truly are amazing people. It is pretty much the same group as when I was an actual student in the school so it is comfortable, familiar and they are all just fabulous, BUT no one knows the connection between my enthusiasm for this week and my personal story.

Me being sick has NEVER once been discussed openly, and I am not sure anyone even really knows.

I may have mentioned this before but that is one of my biggest barriers to recovery…fearing that I will completely lose my identity as the “diet and exercise guru,” or “fitness fanatic” here in the office, and to all the rest of my friends.

I dread the “You look so healthy!” comments that I know will come as my body expands, which to me would signify that I lost total control of myself and was just becoming a beached whale.

If my colleagues don’t know I have a medical problem, and NEED to gain weight then they will just think I am a gluttonous PIG!

Yes, this is what my irrational mind likes to tell me…

So I was thankful yesterday, when I was catching up on the forums here, and a thread regarding the “you look so healthy” phrase, was looking me right in the eye.

After reading various responses, I really got to thinking…

Gwyneth, the creator of the site and an absolutely amazing person with immense knowledge of the disorder and how to be supportive, wrote some information that really made sense, and that I will certainly keep in mind as my body changes. (Please remind me of this in the coming weeks!)

From a non-ED perspective, most people don’t understand the disease and because it is not widely discussed, do not know how to handle the topic.

It can make people uncomfortable and scared, maybe even a bit rejected because, let’s face it, when one is consumed by something as big as ED, it leaves little time for anything else…sometimes coming across as uncaring, completely distracted, or rude.

I felt this passage was particularly useful because, as I have said many times before, one does not have to be underweight to be sick…

And of course many with restrictive eating disorder are not emaciated, but they are ‘weird’. They are not acting like themselves; they lose their train of thought. They seem rather scatterbrained but don’t seem know that they are. Some start to seem strangely automaton and uncaring, while others seem like they are complete emotional wrecks and being around them is like treading on eggshells all the time.

If you’ve ever been around a drunk who is trying to act as though she is not drunk, that is what is like to be around someone who is completely in the thrall of an eating disorder.

I never thought of myself like this but maybe I am? Cooped up in my office most of the day….rarely ever coming out or participating in the chatter of the morning and certainly never entering the lunch room other than to grab a water bottle from the fridge.

In the past, when I have been doing well and put on a few pounds here or there, I was almost offended when others would comment on how “great” I looked. It broke me down and made me feel so FAT and as if everyone was looking at all the disgusting pounds that were packing on by the second.

But that might not be the case…

…here are the things that non-ED people around you notice:

The eyes. Always the eyes first. I can even look at photos and tell you from the translucence of the skin (o.k. I’m a bit more trained at it than most). The skin of someone who is self-administering starvation is flat and opaque — there is absolutely no luminescence at all.

…life comes back in the eyes first.

The next thing that is really noticeable is lessened self-absorption — you can have conversations with them, they don’t lose their train of thought, they actually remember to ask you how you are doing and feeling….

So maybe it isn’t necessarily the weight that grabs attention, but more the demeanor?

That would make sense, because a few years ago, when I returned to my workplace after leaving an inpatient facility one of my female co-workers made the comment, “CJ you glow! You seem so vibrant today.”

Much less appearance focused and I liked that statement way better than “CJ, you are looking so healthy!” but sometimes those remarks are unavoidable. I am hoping that in the coming days I can remember Gwyneth’s insight and how much a person can positively change with increased nutrition, and replay that in my mind rather than a slew of negative self-talk.

But back to NEDA week and where I actually started this post…

Regardless of whether or not my fellow school employees notice, or are concerned with me personally, I was happy to share what this week is about and express my gratitude for our unity in color.

Even if it isn’t physically noticeable, there are TOO many out there who suffer, most of them in silence, and if even one non-ED person remembers that this week is all about NEDA, to me, that is progress.

As the theme of the week states, everybody knows somebody…

And to those of you who are struggling, and get set-back by comments made by those around you, please remember, people, especially those who really really care, want to see you LIVE, get better and be able to beat something that robs you of all pleasure in life.

They don’t intend for their “compliments” to make you feel like a balloon, even though I know from experience that’s often how they were interpreted.

They are just happy to have YOU back; a person rather than a sad, lonely, barely-existent, body.

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19 thoughts on “Spreading The Word and Maybe Some Comfort

  1. wow hun this post is right up my alley.Actually this weekend ,these negative thoughts occured after seeing so many people who havent seen me for months.It was at a zumba party and initially I was afraid and refused to go but my mom encouraged me and insisted to just go and have fun.Once I was there almost everyone told me how pretty I looked,how healthy I appeared and of course the stupid ed made me think ‘i was huge’.But then something happened,suddenly I thought that maybe all these compliments come to prove how emaciated,how weak and sick I actually was before.I mean do we ever compliment ‘normal’ people by saying they look healthy,not really.Yes I have gained 30 lbs but guess what I am not overweight,I am back at my happy weight(period returned with no need of birth control),my irrational thoughts has ceased and most importantly I feel inner peace with myself.Believe me hun that it may seem like gaining weight is horrible and I know exactly how you feel,but we have to trust our bodies and repair all the damage we have done to it.we need to be thankful our bodies didnt fazil us even when we were at our worst times.Remember I am always here for anything you need help with!

    • I am so proud of all the progress you made, mentally, emotionally, phyiscally. you are such a beautiful person inside and out and I know that is exactly what people intended and meant when they made healthy compliments. I am glad you went this weekend and enjoyed yourself! You totally deserve it!

      • Thank you so much Hun I have a feeling that soon you will be better and along my alley … You are in my prayers as always.

  2. I’ve definitely struggled with well meaning comments from the people in my life. When they say “healthy” I hear “fat” and while I’m *starting* to hear “healthy” for what it is, it’s something I have to be intentional about. Thank you so much for sharing this post – I relate to so much of what you’re going through!

  3. I also dread the comments–ANY comments related to weight or food. I hate hearing the “healthy” comments because oh hey, I must look fat (and it also means they noticed something wrong before); I hate the “skinny” comments because oh hey, I must look ill (and it also means I must have looked fat before); I hate anyone offering me food, no matter how innocent their intentions. I just don’t like ANY attention put on my body or my eating (which makes it especially fun hearing comments about how “vain” people with eating disorders are, or that we do it for “attention”).

    The site you quoted is spot-on! I feel like I can “tell” when people are disordered, too, regardless of weight. I’ve seen people of average/high weight and been certain they had EDs, and I’ve people so thin others would probably assume they were anorexic, but felt sure they were at a natural weight for their bodies, rather than disorders. ED-dar…I has it. 🙂

    Anyway. You’re so right about focusing on the “healthy” concept as a good thing! After all, there is SO much more to being healthy than gaining a few pounds, and that goes for the visible aspects, too. ❤

    • I have to agree that appearance based comments are seriously annoying. Couldnt you tell me something nice about my intellect or personality, if you are going to give a compliment at all?
      I have an ED-dar too and agree that weight is not always a great indicator of health. Some people are just naturally built with a smaller frame and thats ok. Every body should be considered beautiful!

  4. Hey lady! This post got me thinking. During my freshman year of college I always thought that since I didn’t tell anyone, no one knew about my ED. However..it’s OBVIOUS. I mean we know that. Just look at us! I was actually shocked when my now-best friend just openly asked me who I was seeing at the counselling center. I had never told her anything, but she knew.

    I also found opening up about my ED the most empowering thing ever. Don’t let it be an embarrassment. If you hide it, it sounds like it’s YOUR fault and something to be ashamed of. It’s a disease! No one is ashamed of having cancer…it’s just something awful that happens and we try to take care of.

    Maybe if you opened up about your struggles it would help you? It would definitely be another set of people to keep you accountable. And I also HATED the “you look healthy” comments even though it was a good thing. But you don’t have to lose your health-guru status if you are gaining weight…show them that you CAN gain weight in a healthy way! Because quite honestly – not to be harsh – they know what real health looks like and might even value your opinion and knowledge even more if you can make big efforts to get there!

    LOVE YOU. that was a marathon of a reply. sorry.

    • Thank you for your MARATHON comment 🙂
      I look up to you in so many ways and you have helped me immensley the past few months. I think you may be right about being more open at work. A few of my co-workers and I actually discussed starting a self-esteem club and doing a PSA over the morning announcements about NEDA week and having free health screens.
      I would love to be strong enough that I can help someone else!

  5. http://www.gwynetholwyn.com/eating-behaviors/post/1740022#post1740344 This is the exact thread for those who are interested. Now everyone understands the “anti-zombie!”

    There are many many comments that people around an eating disordered person make that are completely unacceptable and often have to be corrected, but “You look well”, “You look great”, “You look healthy”, “Wow, you look so much better!” are comments that should always be interpreted as “Welcome back!” and the ED-chatter just has to zip it on that because it is dead wrong in its interpretation.

    CJ — I am really, really pleased you had some conversations with colleagues about NEDA. Congratulations! It’s a big and bold step (even if you are not sharing, at this point, your own deep connection). I am pretty sure everyone knows, but does not broach the topic because you have not broached it with them first — they are respecting your privacy. So I also feel really confident that when you start to hear a lot of those comments about how good you look from people at work, they will be expressing relief (profound relief and joy) at the visible signs you plan to rejoin the living.

    Best wishes, Gwyneth.

    • I hope it is ok that I reference your site! I just find it so helpful and inspiring and honestly, the non-ed perspective that comes from someone outside my family can help combat that nasty ED voice that is relentless normally, but even worse now that I am trying to get away from it!
      Yesterday we talked about starting a self-esteem program here at the school I work for and I was so excited to hear how many staff members were on board! maybe opening up about my struggle could help others!
      thanks for the encouragement 🙂

      • I am honored you reference anything on my site whenever you think it is relevant. I am looking to help out in whatever way I can.

        You mention the self-esteem program that may be developed in your school. You may want to consider encouraging the inclusion of http://www.self-compassion.org/ Kristin Neff’s research on the value of developing self-compassion as it appears to support emotional resilience very well too.

        Just a thought I had. Best wishes, Gwyneth.

  6. Good for you for saying that to your co-workers! Even if they don’t know for certain that you struggle, they probably suspect it sometimes, and having you state something about NEDA helps them be involved, although still privately. I definitely think people make comments based on a changed demeanor more than appearances. I talked to a friend the other day who is overweight, and recently started losing quite a bit. She is struggling with the comments of people telling her she looks great, or pretty…she is struggling that she gets more attention now. She said she feels people are saying that she is only pretty NOW that she’s getting thinner…that they are only paying attention to her because she is becoming more “healthy,” or “socially acceptable.”

    While we were talking I told her that the biggest changes I have seen in her are her increased confidence, her happier attitude, etc. People are most likely commenting on her changed demeanor more than her changed body. Women of all shapes and sizes can have happy demeanors, and I’m not saying that you even have to be at a “healthy weight” to have it! But, if you have an awful disease that is all-consuming and destroying of your mind and body, of course that demeanor is impossible. But as you recover, people will notice, and will be so happy for you. Hope this made sense!

  7. I could really identify with a lot in this post. Often, I struggle with the automatic thought process that occurs when somebody comments on how “healthy” I look now…of course immediately I think healthy means fat. But when I think about it rationally, why would healthy mean fat? Of course healthy is a great thing! I’m beginning to realize that I appreciate my “healthy” look more and more because I’m getting stronger in my recovery, and every so often when my thoughts correlate “health-fat,” I realize it’s just a little part of the eating disorder thoughts that I still need to work on getting control of.
    Getting away from the physical…a good point Gwyneth made was the lessened self absorption and ability to have conversations with others. I’ve noticed I’m able to do this now! My mind is so much clearer and I am actually able to stay in a conversation now! Ohh, and READ A BOOK (and actually know what I am reading!)
    It’s amazing the things that our bodies and MINDS can do when we fuel them!
    Molly ❤

    • oh my goodness to read a book and retain the words will be a glorious day. Its so strange how concentration goes right out the window when you are struggling…obviously because our minds are constantly thinking destructive things or about food, but i think one of the things i am most looking forward to as i gain more strength in recovery is just simply being present.
      i feel like i miss out on so much because my mind is never in the moment.
      so glad you are doing well hun!

  8. Great post CJ! Once again, I can relate to everything. I have recently started noticing thing about myself that reallllly make me sad…which are bad skin, swollen face & eyes,and like you mentioned…not always being there… maybe in body, but thats about it. I have always been (and still am to an extent) an outgoing, happy, positive person! For me to be in a social situation and have anxiety as if everyone is starring at me, or being in that same situation and have absolutely no idea what`s going on around me because I am so “out of it“ is just horrible. I`ve come to the point where the `you look so healthy` comment just might make me happy to be healthy….because lately I look tired, worn out, and lifeless…..and that is not something I want. Healthy may mean gaining a couple pounds (which we all need anyways!) but it also means getting that attitude and personality back that I used to have. I cant wait until Im healthy again!!!! Hopefully very very soon =)

    It seems like your week is going good. Keep it up! Sending love!

    Shannon 🙂

    • Shannon,
      I hate that we can all relate to each other so well because I know how hellacious it can be to feel this way!
      I wish we could all live happy, fufilling lives filled with fun, smiles, and where our size is just not relevant.
      I hope you have a fabulous week and do something nice for yourself!!!! You deserve it 🙂

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