Lake Effect Series: A Sister’s Point of View

I have decided to title the next three months of Eating Disorder Awareness posts “The Lake Effect Series”.  As most of you know my next goal race is a half marathon (The Lake Effect Half Marathon) to raise money for Ophelia’s Place.  If you have a story, information or anything you would like to share please feel free to email me.  (lolzthatswim at gmail) 

This was story was submitted to me by Caroline.  

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My experience with eating disorders does not come from a personal journey or battle with the illness. My experience comes from being the older sister to someone who struggles with one. Although I could focus solely on what I know about eating disorders based on my sister’s diagnosis, I would like to also offer a glimpse into what it is like to love someone who has an ED. I am hoping that this can offer support to those of you in similar situations.

My family’s world was flipped upside down when we found out that Maddie had battled this demon for several years. She was seeing a therapist to work through depression following her best friend’s death in a car accident. Maddie’s therapist had reason to believe that she had an unhealthy relationship with food and confronted her about it. Maddie was never a skeleton. She never looked too thin and never talked about being fat. In fact, she looked like a normal teenager who ate too much sugar and cheese! Though we were shocked that it had gone on so long, the puzzle pieces quickly fit together and we knew that we had missed the signs when we found out that she had been binging and purging. She often took extremely long showers, hid candy wrappers under her bed and seemed to finish a gallon of ice cream in record time. Due to my own ignorance about the illness, I would have guessed that eating loads of ice cream and candy meant she did not care about her body image. I laugh at myself when I think about my initial knowledge of, or lack thereof, of eating disorders. My mom was quick to inform the rest of our family that Maddie’s illness was not about vanity or being skinny. It was far deeper and more complex than that and I definitely made up for my ignorance over the next few years.

Shortly after the big secret came out, my parents made the decision to seek treatment in Dallas, TX for my 16 year old sister. Maddie and my mom temporarily lived in 2 adjoining hotel rooms while Maddie was to attend treatment sessions at a children’s hospital. The rules were rigid: Maddie could not have contact with anyone other than my mom and her treatment team. This meant no phone and no computer. My mom was to supervise Maddie’s bathroom trips. As you can imagine, this put a huge strain on their already rocky relationship post-diagnosis. Maddie was very angry with my mom. This was the first time I felt the direct affect of Maddie’s illness. I was furious with little sister for treating my mom as the enemy, but also felt sad and scared for her. It was confusing to have such conflicting feelings.

Quickly, my parents realized that this living situation and the hospital’s approach to treatment was not the right choice for her. Maddie moved home to Austin and began intensive outpatient treatment, seeing a therapist, psychiatrist and nutritionist regularly. In the fall, she seemed to have a handle on her illness and began her freshman year of college in upstate New York, far away from home. She agreed to keep up regular sessions with her therapist over the phone and seemed to be doing very well. I started to believe that my little sister might have a normal college experience, which in my mind at that time translated to a normal life.

After a couple of trips home due to the death of our grandmother and by Thanksgiving shortly after that, Maddie’s health went downhill at a rapid pace. She packed up her dorm, left before the end of the semester and flew straight to Denver to begin residential treatment. For the next year and a half, Maddie was on a rollercoaster. She went from residential treatment (meaning 24/7 care) to Intensive Outpatient (where she lived in an apartment provided by the facility and only attended daytime sessions) to minimal treatment (living on her own, working and attending a couple of sessions per week). We were told that her diagnosis was EDNOS (Eating Disorder Not Otherwise Specified), meaning she experienced bouts of restricting, binging and purging.

Throughout this time, my family attended an informational weekend called “Family Days” at her treatment facility where I learned loads about eating disorders. We started by talking about what to say to our loved one, what not to say, how to act, how not to act. We discussed our fears, our ignorance and our experiences upon the initial diagnosis. We talked to every specialist under the sun: Therapists, Psychiatrists, Medical Doctors, and Nutritionists. We had the opportunity to share stories with other loved ones. We were able to have a question and answer session with patients who were discharging. This weekend, though exhausting in every possible way, lit a fire in my heart and helped me to understand my complex little sister. I saw her in a completely new way. My anger, confusion and sadness turned to sympathy, support, advocacy and even empathy. Eating disorders were no longer about a need to feel thin. They became so much more to me than that: a need to be in control, a means to feel less anxious, less depressed, a manifestation of Bipolar Disorder, a way to deal with abuse or other trauma, and on and on. It would take me a novel to explain all that I learned during this time. Talk about an eye opener.

The most difficult time during all of this for me was when Maddie missed out on spending Christmas with us. We were able to ship her presents to her under the agreement that she would need to open them with staff supervision to ensure that we were not sending any banned substances or objects. We were able to watch her open her presents via FaceTime. This felt incredibly vulnerable to me. Here I am, sitting around the family Christmas tree, in the home that I grew up in, missing my baby sister, watching her open her presents while being supervised like some kind of criminal. Don’t get me wrong: I understand why that is necessary and I am thankful that they are so cautious with patients to avoid tragic situations. I understood and appreciated that, when I was thinking logically. But, as her big sister on our favorite holiday, I was not thinking logically. I was being nostalgic; remembering the annoyance that was my baby sister, running in at 6:00am on Christmas morning, insisting that we all get up because “Santa came!” I was remembering her role as “Santa”, passing out presents to each of us and making sure that she had just as many as everyone else. I was remembering how bratty I used to think she was, but also how festive and fun she made Christmas morning. Now, here I was, watching my baby sister struggle with a terrifying illness on FaceTime. It seemed so staged, so sad and so disappointing. Christmas was never the same after that. It is still one of my favorite holidays, and I am thankfully able to spend it with Maddie again, but it lost some of its magic that year.

I am happy to say that, though eating disorders are absolutely a lifelong struggle, Maddie is doing well and living her life the way she wants to. She still has bad days, she may not eat the way I wish she would, and she may still have a long way to go, but she is functioning. She is living. She gets out of bed. There are many days where I see her and recognize happiness, something that I could not have said a few years ago. I actually have hope that she will be at peace some day. I know that she may not be at peace every day, but the happy days seem to be outnumbering the sad days, and that is surely something.

I am hesitant to offer any kind of advice, as each person with an eating disorder is so completely different and I am no expert. What I think is important is to remember your love for that person. Never let your confusion or disbelief (“how could someone do that to themselves?!”) cloud your love and support for them. I also think it is important to look for other illnesses. For my sister, that ended up being a wide array of things including anxiety, depression, ADHD and Bipolar II Disorder. What we thought was initially about an unhealthy relationship with food quickly became a serious issue with Maddie’s mental health and finding the correct medications. Something that resonated with my quickly after meeting with Maddie’s treatment team in Denver was the possibility that, because Maddie suffered from an eating disorder, my Mom, sister and I were also at risk. Genetics absolutely play a role in eating disorders. Her therapist was quick to advise us to be careful of strict diets. You never know when you could trigger something in yourself.

One last thought: if you have a loved one who is struggling, do NOT minimize the effect this can have on you. Do NOT take your own mental health for granted. It can be extremely depressing to see someone you love battle such a strong and overpowering demon and to think that this does not have an effect on you is a complete lie. Take care of yourself, too. 

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Thank you again friends, family, internet for all of your support.  If you are able to donate that would mean the world to me.  Anything you can do to help, whether it’s supporting, sharing a story, sharing the goal, or just listening to a friend.  You can help.