Thursday, February 19, 2015

Raising Awareness: Things you NEDA know

Hi friends! Today's Thursday blog post is something very different from my usual mommy/soapbox blogging. It may be one of the most important things ever shared on this blog--and I didn't even write it.
One of the things I have tried to do with my blog is to raise awareness about topics that I feel are important. Usually this is in relation to diabetes, because that is one of my struggles. It can be so hard to write about the problems closest to your heart, and I have a lot of admiration for those courageous enough to share their stories (because the things I struggle with the most, I have the hardest time sharing). 
Today I invited one of my dearest friends, Nicole, to share her story in honor of National Eating Disorders Awareness (NEDA) Week. For the past few years she has struggled with anorexia and depression, both things I have written about before, both things that I know very little about in comparisson to what she knows. I am so grateful for the many, many things she has taught me. 
The thing I love about what she has shared with me is that she not only talks about the disease and the struggle, but how others have and can help her and how we can help prevent eating disorders.
Take a minute. Share her story. You will be glad you did!
Love, Marinda

Why a bag of chips is my worst enemy…

I could have titled this with just about any food item, really I just wanted an item that you can relate to and I can use to perfectly describe my battle with food.

Take a bag of chips.  Most of you see it and think, "yum, I will have a few."  You reach in, grab some, eat some and that is where it ends.

My battle starts at the grocery store.  My first thought is I better not buy it, or I will eat it all and hate myself.  My second thought is, it’s part of healing and a test of my strength to be able to purchase a bag of chips and not binge on them.  I need to do it.  This battle goes on, as I continue to shop and even as I purchase the bag and make my way to the car.

When I get home, I really want those chips.  I give myself a pep-talk about how I can do it, I can be a normal person and only take a couple.  So I open the bag.  I take a few.  Then my type-A-OCD personality takes over.  I “must” eat all of the broken chips.  So I proceed to root through the bag looking for any chip I consider imperfect or broken.  Once those are gone, I look at the bag and think, “wow, no sense in saving the rest of this I nearly ate all of them and if I leave them I will only be bad again later.”  So I eat the rest of the bag.

By the time I am done, I am angry with myself and my lack of self-control.  At this point, I figure I have already ruined the day so I might as well eat everything I ever wanted. I go into a food trance.  I have no other way to explain it other than I am the cookie monster possessed by the consumption of food and I must eat everything.  If that means eating by stirring peanut butter in ice cream, or topping macaroni and cheese with mustard and BBQ sauce … that’s what it means.  I do not discriminate, I do not taste.  I simply eat until there is nothing else to eat.  Until I am so sick that all I can do is sit and cry.  This usually ends with me in the bathroom wishing I was good at throwing up, or trying to take laxatives in the hope that it will all be better tomorrow.  I know, perhaps a little too honest, but it is the truth.


My Struggle

I have an eating disorder, if you didn’t know that or weren’t sure, you do now. It’s kind of hard to hide when you once weighed as much as a twelve year old in a 5’7” frame. I chose, however, to remain silent because I didn't want to be a hypocrite or to be judged by others. While I still am not at peace with myself, I have wanted to be more active and help prevent others from going down this pathway. Feb 22nd marks the start of NEDAwareness Week, and now is a perfect time to share with you.
Three years ago, I was officially diagnosed with Anorexia Nervosa. At 82 pounds, I was severely malnourished and should have been hospitalized. I was depressed, suicidal, and spent a lot of time hiding. I lost most of my friends, pushed away my family, and pretty much only let Lucy in. If you know Lucy, you know that she is a pretty demanding, energetic little dog, and just what I needed.
So how did I get here?  I believe it was a combination of teachings as a child, genetics, and the need for approval.  I was taught to eat everything placed in front of me, to not waste, and given food as a reward or had it taken away as a punishment.  While these are wonderful notions, I believe it is more important to teach kids to try things but not to force them to finish every last item.  I am not the voice of reason here, just listing some of the factors that contributed to my disorder.

Most of my friends and family did not know how to approach the issue, as I took every precaution to avoid them and situations where food was involved. This seems to be every social gathering. I am pretty sure it became easy for them to not to be there, because I wouldn't let them.

The need for approval was probably the number one contributor to my success.  When I first started losing weight, I actually was healthy and happy.  I weighed about 20 lbs. more than I do now, but that didn’t matter.  I was confident, and loved myself.  Even if I gained those 20 lbs. back now, I would not be confident or love me just because of those extra pounds.  I know, astonishing.  I can also tell you that losing more weight isn’t going to make me happier.  However, the compliments I got about losing weight made me strive to lose even more.  I am OCD, a type-A personality.  If I am going to do something, I am going to do it.  I lived for those compliments and would punish myself by further restricting if I didn't receive approval because I believed I had failed.  

Now I receive compliments about gaining weight and how much better I look.  Well, they have the same affect.  They highlight the fact that I think I am “fat.”  That gaining 40 pounds has made me a whale.  Then I get negative and beat myself down again for not being good enough.  You, see it is a vicious cycle.

Finally, I am not sure what role genetics played in it.  However, depression was a major contributor and I know that there have been genetic studies tied to depression.  I am a contributor to the ANGI research and would love it if my small role in it could help future sufferers.

Oversights in Treatment

Gaining weight took a team of doctors, friends, coworkers, anti-depressants, nutritionists, family support, and therapy. I have been and maintained a "normal" weight for two years now, but I really want to take some time to address what I feel were huge oversights in treating this disease.
        First, the doctors were so concerned about weight gain, that I was placed on a much too large dose of Prozac. While this worked to help me gain weight, I tuned out the world. I am sorry if during this time I seemed distant or like I didn't care. Quite honestly, I felt nothing. I didn't smile, laugh, cry or even feel. I began cutting because I was pretty sure I couldn't feel pain. I never intended to try and kill myself, just to make sure I was still “alive.”
        Going to a nutritionist was also a horrible experience. Two nutritionists were covered on my insurance, but only for severe obesity. I spent hours on the phone with insurance, as did the wonderful Human Resources lady at my work. After all of our hard work, we finally got insurance coverage, or so we thought. When the bill came later, it was not covered and after several more phone calls and being placed on hold, I finally gave up and stopped going to the nutritionist. Why? Because I flat out couldn’t afford it. Doesn’t it seem wrong that being in a life threatening condition and severely underweight, the help I needed was not covered by my insurance? Yet if I would have had the opposite problem, it would be covered? I have been on both sides of the scale in my life and I just want to say that they both
would benefit from insurance coverage.
        Finally it seemed like there was a lack of awareness of eating disorders. Many of the doctors would give me pamphlets about losing weight and proper portion size. They would say things like don’t look at certain parts of it, but this is what you should be eating. Another told me to eat all the ice-cream I wanted. While eating onion rings and ice cream without digression led to weight gain... I still felt unhealthy. This is the struggle I have had for the last two years. What is healthy? What does it look like to eat normal?!?! I just don’t know. I don’t feel full, no matter how much I eat, or how slow I eat. I go from starving to sick with nothingness in between. I crave sugar and sweets and have to convince myself to eat a vegetable or fruit. Not that they aren't good, but with the amount of highly processed foods I ate to gain weight, I just cannot seem to get normal in perspective. Add to that, that if I restrict I terrify myself that I could go back to anorexia. I live somewhere in the land of restrict one day, binge another. This is why I have had such a hard time speaking out. What right do I have to tell someone how to cope or how to help someone else if I still struggle? Someone once told me that healing from an eating disorder is one of the hardest things to do. It’s not like alcoholism or cigarettes. And funny enough no one treats these like they are something easy to do. You cannot just quit. You need food to live and survive and learning to balance is difficult. I am still working on this, and will continue to everyday for the rest of my life.


Things That are Actually Helpful


·        Join NEDA and a support group.  You need help dealing with this, just as your loved one needs help.  It is going to be a long journey and any support or understanding you can get will only be a benefit.

·         Do not blame, undermine, or try to provide cures to someone suffering from an eating disorder.  It is a mental illness and not something that has an easy cure.  Avoid sentences like “Just eat,” “Why can’t you be happy?,” and anything about looks.  Instead talk to us, treat us like a normal person.  You are not our doctor and if we fill like we are being treated by you we will act like petulant children.

·         Create a safe place.  I knew that no matter how bad things were I could always go to my mom for affection and love.  She would simply hug me, and make me a something to eat.  Why was it ok to eat there with just her?  I felt safe, not judged and she didn’t push it. 

·         Avoid open ended questions, such as “What would you like to eat?”  Too many options or decisions will shut us down.  We get overwhelmed by all the possibilities.  Even at my worst, I loved a slice of pizza, and someone saying “I feel like a pizza” and then letting me pick a topping worked way better than the open ended questions.  By making food decisions less intimidating, I was better able to accept them.

·         Be patient. Play by our rules, even if they do not make sense to you. Hopefully one step at a time we will recover.  I have never been a fan of butter on my toast, so if you wanted me to eat something it was better to make me a toast my way.  Why?  I felt like you were listening, and surprise you got me to eat.  Trying to get me to eat more or eat more fattening only made me angry and stubborn. 

·         Finally, affection.  A lot of people pulled away from me as I pushed them.  Even people who were very close to me didn’t know what to do.  I craved affection, a hug, contact of some sort.  For me I finally got this from Lucy, but human interaction is critical.  We need to feel like we matter and are noticed not just in a negative manner or because you have to deal with us.


Prevention

I wish I knew then what I know now…
I cannot say enough on the topic of prevention.  Anything you can do to stop an eating disorder before it starts is critical.  Here are some items I wish I knew before I went down this pathway:

·         Nothing fits right.  You look like a prepubescent boy in your mothers clothing.
·         Your heart literally hurts. It hurts to breath, it hurts to walk, your boney legs rub together when you try and sleep making it nearly impossible to get comfortable.
·         You lose friends.  Why?  You don’t want to be in situations where you are uncomfortable or food is involved.  They don’t know how to help and unless they are persistent it becomes easier and easier to not have them.
·         Guys really do not like a walking skeleton.  I cannot count the number of times someone said things like, “You would be a lot prettier if you had a little meat on your bones.”  My husband became so worried about me that he thought he would hurt me if he touched me.  Really great for your relationship…
·         Anorexia can kill you.  It is the most common cause of death for young women ages 15-24.
·         Anorexia can make it difficult to get pregnant and easier to lose a baby if you do get pregnant.
·         You become a liar.  You use any excuse you can to avoid people and food. You hide things, you try to sneak the dog your food, you say you don’t like things, you aren’t hungry, and oh so much more…
·         Deciding what you want to eat is the most difficult decision of everyday.  You think about food 24-7, but it’s a constant battle between what you will allow yourself to eat and eating everything in sight.
·         Losing a large amount of weight doesn’t make you more attractive.  I looked like a cancer patient.  Just because you lose weight doesn’t mean you will be happy with your body.  I had excess skin that could make a Shar Pei jealous.  That little triangle some of you strive for, I had it.  I hated it.  I just found other things to hate about myself.  It wasn’t an accomplishment.  It pointed out the other flaws I thought I had.
·         Getting help is worse than pulling teeth.  Insurance companies are a pain, doctors are not educated or too scared to say anything, you have lost your friends and maybe even family members.  Once you are at a “normal weight” you are considered fine unless you are persistent.  Just because you gain the weight back does not mean the mental struggle goes away.
·         And the scariest statistic to me:  20% of people suffering from anorexia will prematurely die from complications related to their eating disorder, including suicide and heart problems.
I hope that will discourage you.  I do, however, have some other prevention items that I wanted to share.

Is it possible to prevent an eating disorder?

Yes. Prevention is key to future generations.  Watch what you say around your kids. They absorb everything and I get worried as I see and hear five-year-olds saying they are “fat" or teenagers with Pinterest motivation boards teaching them how to look "perfect." You never know-- what may be a joke to you, may be taken seriously by them.  It is more important to be confident and happy with yourself. I believe that is the only way to truly be healthy. No airbrushed picture should be someone’s motivation.
Here are a few tips and highlights that I believe can help:
·         Encourage a balanced diet. Everything is okay in moderation. While I agree that highly processed foods are not great nutrition choices, not allowing them only made me crave them more and if I gave in, resulted in binges.
·         Food is not a reward or a punishment.
·         Exercise and have fun. Make it a part of your life, but not your whole life.
·         Encourage your kids’ curiosity to try new things, try a little at a time. Serving an adult sized portion to a child and forcing them to finish it isn’t going to work.  This likely will make them learn they have to finish everything all of the time, even when full.  It also can make them more resistant to new foods.  I know that if I feel forced I associate that item with the bad feelings.



She's amazing. Am I right? 

 If you or someone you know struggles with eating disorders and you would like to find out more about NEDA or Nicole's story, please email me or leave a comment and I can put you in touch with her. Thanks!

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