Eating Disorders Awareness Week and my Reasons for Speaking Out

image By: Jessica Mellow

Once again it's eating disorders awareness week (#NEDAwareness), and as always, I get conflicted about the overall effects of such activism. I often wonder if it may actually have a negative effect on people struggling with eating disorders. But ultimately, I think the goal of breaking down the stereotypes and misconceptions that somehow still exist is something that i can definitely agree is important, even necessary. I very actively speak on the topic, and even did a bit of public speaking years ago. When I talk or post about it, I often wonder if my reasons for doing so come across, and so I decided to lay out some of those reasons.

Forgive me if this is a little all over the place, as I'm writing what falls out of my brain onto the page and I tend to get wordy. I could get even wordier and go into the misconceptions and stereotypes themselves, and the way people speak to people with EDs, but that is another topic in itself. This is specifically to clarify why I am so outspoken on this issue.

Having been through hell and back with severe anorexia (for several years), followed by further years of intense rotating bouts of bulimia, binge eating, restricting, compulsive eating, night-eating syndrome, orthorexia, and at various times comorbid social anxiety, general anxiety, depression, panic attacks, OCD, even a brief (year-long) encounter with agoraphobia...this is a topic near and dear to my heart.

I don't speak about it to be a downer or make people uncomfortable, but to reduce the stigma and make people realize they don't NEED to be uncomfortable, at least uncomfortable enough to avoid the topic, as avoidance won't get anyone anywhere (despite what I tell myself regarding things like paperwork and taxes and such).

I don't speak out about my own experience for pity, as i don't like be on the either end of a pity party. It isn't my identity, but it has been a huge factor in shaping my life both for the negative and the positive, and i don't regret either. I am truly grateful for the people I've met, what I've learned, and where the crazy road has ultimately led me...a far cry from the linear expectations I had for my life prior to the ED throwing everything off-track. I have a thicker skin, a better sense of humor, more drive to try new things even if they seem crazy, worry less about what people think (in some ways anyway), and a far greater love and appreciation for life.

When someone sees me bodypainted, in person or via photo, and comments (as they often do) about how confident I am in my body, I usually contradict this statement. I do not do this to fish for compliments...anyone who knows me knows that I practically flinch when complimented, and only recently learned to just say "thank you." I say it because I have always been honest to a fault, and actually do still have major body image issues...more so than I like to admit, as it seems even to me like a lot of unnecessary occupation of headspace. I want people to realize that to do something they love, they don't have to be completely at ease with themselves first, because they might never get around to it...and if they go ahead and do those things without waiting around for the confidence to show up, then it often results in feeling at least somewhat better about themselves as a person.

I speak about it because it is a disease that thrives on secrecy and manipulation, and that is how so many go unnoticed or misunderstood. For all the people that speak out, a far greater number do not...and if being blunt and outspoken on the issue, even when it's not what people want or expect to hear, can help even one person, it's worth it.

Through the years, especially since I started opening up about it, around the time I got bodypainted for the first time to film the "Healing Behind the Paint" video ( if you want to see a little more of my backstory and how i got into bodypaint and how it tied into the healing process, i wrote about that as well: ), I've had many people reach out to me. I've had extensive conversations with parents at their wits end who needed advice on how to best approach the situation and support their children, others in recovery but not exactly thrilled with it (recovery is not all sunshine and flowers, in fact it can be utter hell), others who had a friend or family member with an eating disorder who wanted to support the person but were finding it harder and harder to deal with, and still others caught in the vicious cycle of their own ED, wanting to know how to break that cycle.

While I've learned a lot through both personal experience and extensive research, i still feel bad when someone asks me the secrets of recovery, assuming I have found it, and I am unable to tell them that elusive secret...having to admit that I am not 100% better, that I don't know if I even believe that full recovery is possible. But I think honesty is the best policy, and what I can do is relay a message of hope.

As much as many still like to think of eating disorders as a vanity issue, the reality is far different: the reality of crippling anxiety, fear, isolation, self-punishment, and the frustration of intellectually knowing things that your mind will not effectively process nor apply to your own human body. It is a reality of denying yourself the most basic human needs, and this reality came terrifyingly close to killing me on many occasions, and has already taken the lives of a number of close friends as well as acquaintances.

I've had extremely low lows, so I know what it's like to be told things can get better and think "maybe for you." I know what it's like to be physically weak enough that it takes an hour of deliberation before deciding to expend the energy it takes to simply roll over in bed. To not sleep for 3 days straight out of fear that if you fall asleep, you won't wake up. To have tubes forced through your nose. To have needles continuously jabbed into your veins. To have every shred of dignity taken away by having a 24-hour guard watching your every move. To have doctors act like they are scared of you, therapists who flat-out say they don't trust you. To receive ignorant and hurtful comments from both people you know and people you don't know, and use those comments to further your own self-hatred. To have the words in your head not match the words that come out of your mouth. To push away the people you care about the most. To let an extra bite of food dictate whether you can go out that day. To consume several thousand calories in the span of an hour or two and not be able to stop until you are crying from pain. To quite literally eat while in a sleepwalking state and not even know until you see the food gone. To not have control of your own thoughts or actions, yet convince yourself you have more control than ever. And even in recovery, I know what it's like to live in constant fear of relapse, and even the fear that part of the mind might WANT it because that damn voice never completely goes away.

That said, coming from that point, and building a life that I truly love, I know the feeling of exhileration once you get a taste of real life. When you feel true passion for something again. When you realize the beauty in the little things that you previously overlooked or took for granted every day. When the smile plastered on your face is once again formed from actual happiness instead of being a mask. When you can let the little things go and appreciate both the good and the bad in life, realizing that there is a balance and a reason for everything. When you can learn to do things in spite of paralyzing self-mandated and societal standards of perfection. And when you realize that you are a survivor, and finally feel a sense of confidence that you can handle almost anything life throws at you.

Hope really is a thrilling concept, and when the hopes you have for life in recovery are realized, and even surpassed exponentially, it gives you a reason to fight. That fight is one that varies on a day to day, sometimes minute to minute basis...some days it's easy and other days you really have to fight tooth and nail. But it is a fight that is far more possible than it feels. I may not be totally happy with myself or my body, but I have a genuine sense of joy when I wake up every day, a genuine feeling of gratitude. It's a feeling I wouldn't want to trade for anything, and it's a feeling I truly wish for every person still struggling, whether with an eating disorder, with another mental or physical illness, or just going through a rough patch of life in general. And to be able to provide even a shred of hope or inspiration for someone who is in a dark be able to say I truly do understand, have been there, and have managed to find the other beautiful side of something that means the world.

As I said, I won't go into specific stereotypes and misconceptions here (that is another topic altogether). Take what you want from this, but if anything, try to catch yourself and actively recognize and reject the innate ideas society has instilled where a person's weight or appearance dictates their worth as a human being. Realize that this is an easy and very real way that every person can contribute not only to the fight against eating disorders, but to help move society forward as a whole.