A Page in Your Survival Guide

October 28, 2020

“Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide”- Morgan Harper Nichols

Oh, how desperately I needed someone else’s words to guide me during my family’s darkest days. When my sister was first diagnosed with an eating disorder, all we had was each other. We didn’t tell anyone outside of our immediate family about it, although they could have guessed. We thought we were the only ones to have ever experienced this cruel monster in our home. We didn’t realize how many suffer from this every single day. That’s why today, I realize the importance of advocacy.

In September, I joined The Alliance for Eating Disorders Awareness and the Eating Disorders Coalition for their 2020 Virtual Advocacy Day. During the Day, as we waited to meet with Congressional staff people, and sometimes, the Representative themselves, I debated whether it was worth sharing my personal story. Was it worth sharing why I – someone who hadn’t experienced an eating disorder – chose to be here?

While anyone can read the statistics of how many people suffer from eating disorders, hearing people share their stories and experiences with this disease made me feel validated in so many ways. As I was listening to all of the other advocates who had suffered, or whose daughters, sons, sisters, or fathers experienced the brutal grasps of an eating disorder, I realized everyone’s story is too important to not talk about it. Too many lives are at stake to not TALK ABOUT IT.

So, throughout the Advocacy Day, as we (virtually) met with lawmakers and influential people on Capitol Hill, I told my story. I shared why I was there to spend the day advocating for eating disorders awareness.

My first blog post on The Alliance’s website, Everyone Has a Why, was one of the first times I started to advocate for eating disorders. My phone was blowing up for days, with messages of gratitude telling me I wasn’t alone in this journey, that others are experiencing or had experienced a journey similar to mine. It took me over a year to be open about my sister’s eating disorder, because I felt that since I wasn’t experiencing it, I didn’t have a right to be hurting. But now, I realize that logic is so twisted and backward in every way possible. If it were any other disease, my family would be heartbroken and upset that our loved one is suffering, so why didn’t I give myself permission to admit that I was struggling and ask for help? So here I am now, an advocate for eating disorders awareness, trying to enact change in Washington, DC and beyond.

Before I shared my story openly, I used to thrive off the compliments I got telling me that I “had it together” all the time. These comments signaled to me that living my double-life was working extraordinarily well. Little did most people know, I was running from my hometown to school, to treatment sites, to therapy appointments, and back. That double-life I was living could last only so long before I cracked and I so desperately needed and craved a sense of support. I could not and cannot do it alone. No one can.

That’s why I’m sharing with you today the importance of advocacy and using your voice: because everyone needs to know they are not alone in this.

When my sister was in treatment, I wished I had someone. Besides the amazing people I met along the way at treatment, I didn’t know of any other families who had experienced this. It wasn’t until I started to speak openly about eating disorders, I realized there are so many people who are either affected or know someone’s who has been affected by this disease. That new awareness furthered my passion to speak out.

Take all the people from EDC’s Advocacy Day, for example. All the folks I met had some sort of connection to eating disorders that brought them there, and it brought us all together in a virtual room via Zoom. We were there to support a cause that has become so near and dear to all of our hearts. Because we have lived the experience, whether it be us or a loved one, we are now empowered to and see the importance in advocating for what matters. We value the change we’re hoping to create, so not one more family has to experience the same hardships mine did.

So, I leave you with this thought:

If we started responding to, “How are you?” with the truth, wouldn’t we be able to build more vulnerable relationships? If we started checking-in on our friends, wouldn’t we feel more connected? If we started talking less about people, and more about ideas, wouldn’t we be more knowledgeable? If we used that new-found knowledge and awareness to advocate for positive change, especially to help those who face barriers to care, wouldn’t we feel like part of the global good? If we did all of these things, wouldn’t we all find more value in life?

Being vulnerable can be scary. Heck, even advocating and using your voice can be scary. But it is time to start now. To start talking about what matters. Because this matters. The lives that are lost from an eating disorder every 52 minutes matter. Your story matters. You matter!


Stephanie Kaine is currently an undergrad at the University of Central Florida, Burnett Honors College, and hopes to become a therapist someday. She loves to help others and advocate for what she cares about. In her free time, she loves to find new places to adventure, read Danielle Steel books, and spend time with her family and friends.