In honour of national eating disorder week starting February 1st, I thought it would be more appropriate than ever to share my story of being a sibling to someone with an eating disorder. If you know anything about my family or have ever met my sister, you have probably heard her story many times. My sister is incredibly brave; she constantly shares her experience with mental illnesses; and does this through various speeches, articles and public advocacy. However, from the perspective of someone who has witnessed her journey for six years now, it is pretty strange to hear the stories and struggles wrapped up into 20 minutes of a well-tailored speech or shortly summarized in a 1-page article. Eating disorders are complex and terrifying, they have the capacity to take over someone’s life that just can’t be expressed in words. You can hear the facts and listen to the stories, but until you or someone you know is struggling with this disorder, you don’t understand how much it can change a life.
I first found out she had anorexia nervosa when I was in grade 9 – and I had absolutely no idea what that meant. My mom picked me up from school, sat me down and tried to explain that this was an eating disorder. If I am being totally honest, I really didn’t see it as a problem at first. I thought it was a stricter version of a diet and something that could easily be changed. I decided to venture onto google to see if I could find out more about ‘anorexia’, and it lead me to a psychology today article. It stated that “Anorexia Nervosa is an eating disorder manifested when a person refuses to eat an adequate amount of food or is unable to maintain the minimal weight for a person's body mass index (BMI).” Okay, my grade nine self-thought… what the H-E-L-L does that mean? How can someone just not want to eat? I was incredibly confused - my entire family was. We had no idea how to navigate what was about to be an incredibly difficult part of our lives.
After the diagnosis, I saw a lot of change happen with my family and even bigger changes happening to my sister. Dinner time, which was once a shared family time, became screaming matches and uncontrollable crying. I saw my mom cry for the very first time in my life - she was so lost and scared. I saw my sister, once a social butterfly who actively participated in everything become distant; she isolated herself from her friends, aggressively fought with our family and things that once made her happy ceased to matter. Not only to mention the physical changes of rapid weight loss, thinning out of hair, red fingertips and frequently being cold. When I was first doing my internet search of what anorexia was, it didn’t warn me how much it was going to affect my relationship with her. She was my best friend growing up, but anorexia became seriously detrimental to our relationship. All of our conversations were centred around food; one of us was always yelling and one of us was always upset.
Over time it DID get better, slowly but surely. As my family learned how to cope through therapy and support groups and Kate got the appropriate help she needed, we all started to recover. Along the way, there were multiple setbacks and fluctuations that really hit us hard – any sort of journey to recovery is never linear.
If you have never experienced them, eating disorders can be such an insane concept to try and wrap your head around. For someone like me, I absolutely ADORE food; I have my favourite types and things like going out for dinner are exciting. But to my sister and all those who are dealing with eating disorders, food is terrifying. Everything in your life becomes centred around eating – If I go out what will I eat? What is my next snack going to be? If I see this friend, will I be able to eat? What I noticed with my sister, however, is that the eating disorder wasn’t actually about food. Micromanaging intake and restricting the food she ate was about control. This was a concept I had a really hard time understanding, how can food be linked to any sort of control? What I’ve come to discover is that food became the one part of her life she felt the sense of control over. Food became a mechanism for dealing with thoughts of OCD and Anxiety. When she restricted her food to a dangerously low point it was because she was looking for a sense of peace within the terrifying thoughts of her mind.
There are days when things aren’t perfect, there are days with set-backs and fear, this disorder is 24/7 and it is really hard to see someone you love go through that. However, there are things that I have discovered over the years that helped me cope as the sibling of someone with this disease.
Your problems deserve to be heard
This one I really cannot stress enough, specifically for someone that is a sibling to someone with an eating disorder. I found myself actively not telling my parents when I was struggling with my own problems because I felt like I was going to be a burden. There was so much going on with my sister all the time, that I felt a responsibility not to add any extra stress to their life. It became exhausting trying to keep everything to myself, to the point where I couldn’t handle it anymore. Reach out to someone, anyone, and tell them your stories. Your problems deserve to be heard and acknowledged.
The eating disorder is NOT the person
This one is harder to understand, but once you do, it can really positively change your relationship with the person struggling. A lot of the time, eating disorders can make a person easily aggravated and change their behaviour. When they become like this, it’s really easy to get angry or frustrated with them. It’s in these situations where you have to realize they are battling with their own ‘evil demon’ inside their head, and it’s that evil voice in their head that is yelling at you – not the person themselves. When I realized that, it became a lot easier for me to deal with bad situations and help her fight through them rather than fight with her.
Communicate - ask the person what you can do to help
This is literally one of the easiest and most effective things you can do. A lot of the time you can’t understand what they are going through, and giving advice might not be the most effective way to help. When my sister is talking to me, I usually ask her what she wants me to do. Sometimes it just is listening, sometimes it’s validating and even just sitting in silence together. Tailor your support to what they feel will help them to be the most effective.
Educate yourself and the people around you
One of the best ways you can understand what they are going through is to try and learn. Talk to them if they feel comfortable sharing, read books on the disorder; do everything you can to know more about this. Also, open up to your friends and tell them what’s going on. There is nothing more upsetting than hearing the phrases ‘she looks so anorexic’, or ‘I just ate I really should just throw up’ being used casually – because you know how serious those statements actually are. I am fortunate enough to have an amazing network of friends that have supported me when I need help and that know I am hypersensitive to topics like that. By telling your friends what an eating disorder is and how it affects you, they become advocates and help you change conversations around dieting and mental health.
To my sister, I love you so incredibly much. You have been through hell and back and have come through resilient, strong and powerful. You face the toughest battles every day and I couldn’t imagine going through what you do. Keep sharing your story – it truly is amazing.
Photo provided by Megan Farrell