Can you tell me about you and your experience with your sister’s ED?
I am Sofia Castellanos. I am 13 years old, and in 7th grade. My identical twin sister was diagnosed with an ED at age 11, and is currently at a residential program. it was really hard for me, actually. I was really close with my sister, since she is my identical twin. I really love her, so to see her struggle so much was really painful for me. I really wanted to help her, but I didn’t know how. I lost a lot of trust with her, which was hard because that is something I always had with her. To see her transform into a completely different person was really scary and traumatizing. I think her ED definitely changed our relationship, which is really painful. I am just hoping some of that can be built back again.
Did you know something was wrong with your sister before your parents? If so, how did you know something wasn’t right? If not, how did you find out?
I definitely knew something wasn’t right. We have always been very connected with each other, so I was able to sense that something was wrong. My sister’s first eating disorder diagnosis was ARFID, this later developed into anorexia. Once we were in the car, and my dad had gone into the store to pick some things up. She had been slowly developing a fear of eating, she would restrict, but not say much as to why. When discussing this in the car, I said to her. “You’re afraid of your throat closing, aren’t you?” Yes, she was afraid of her throat closing due to her food allergies (eggs and nuts), she admitted. She has had those allergies all her life, and her fear grew as she got older. Anorexia is different but makes even less sense to me. I didn’t have any information on what anorexia was before. I now believe it is so important to educate young people since many do not take it seriously or understand the damage it causes. My sister made comments not only about her body, but my body as well. She would tell me I have the perfect body and that she was “the fat twin.”
Months after her anorexia diagnosis and second treatment cycle, I started talking to my parents about how something wasn’t right again with my sister. She had been in outpatient treatment and appeared on the outside to be doing fine. But she would act odd at school and never let me eat lunch with her. My parents listened and kept it in mind when I told them, but it stayed at that. When I questioned my sister, she got mad and defensive. I knew that there wasn’t a point in questioning her—I already knew the truth and what her response would be. She took her food and drinks upstairs to her room and isolate in there. She was irritable. There was constant body checking and comparison. It felt like I was telling my parents a million times, but nothing seemed to permanently change. I felt bad for “accusing her” just in case I was wrong and what I suspected. Then things just changed.—she was caught throwing out her food. She went downhill at a fast speed ending up in the hospital with us looking for residential programs.
Feelings aren’t good or bad, they are just feelings. Sometimes siblings feel guilty, sad, or angry. They don’t like admitting those feelings because their sister or brother is sick and they think they are bad for having those feelings. Did you ever feel that way? If so, can you tell us a little bit about that? If not, did you ever feel sad, guilty or angry? Did you talk to anyone about those feelings? Journal? Play sports? Call friends? Did that help?
For sure. Coping with feelings is one of the hardest parts. Often times, I feel guilty for not spending enough time with her before she has to go to residential treatment. I want to spend time with HER, but instead I end up spending a lot of time with her ED and I don’t like it. I feel guilty for feeling angry. That is something that will take a lot of time for me to heal. People tell me that I have the right to be angry, but sometimes I feel like I should feel more compassion than anger. Since my sister is sick, I feel like expressing my own feelings adds more stress for others. I don’t want to add stress, but it’s important to talk to someone about how you feel. I feel awful if I say something triggering to her, but also so helpless because you would never think a simple comment could have such a large impact. Don’t be ashamed for what you feel either, it’s all normal and okay.
For me, a lot of confusion comes from people thinking they know what it’s like, or the impact it has on others. People seem to think an ED patient is depressed all day and sitting in their own feelings. While this can be the case, my sister’s journey is also very external. Her rages and outbursts can get really scary.
I think it’s important to find things that you truly love in life. Once you can find this, it can work as a distraction and coping skill. For me that is acting and singing. Expressing myself through the arts is a big journey I’m on. I did try other things such as journaling, and I found it helped in a way, however I have recently changed my approach to journaling…. When I have a diary full of hard things it can be painful to look back at later on. So now, instead I do it digitally. This way I can write things down, and then easily delete it later. This helps me to reflect on the situation and remove it when I am ready to do so.
What kind of support did you get if any? Was it helpful? Why? If you did not get support, what do you wish you had?
I do get a lot of support. Sometimes I don’t want support. Sometimes I just want to be alone in my own thoughts. I think I am still working on finding ways to cope that are helpful for me. It varies from time to time, and so it’s important to have a variety of skills and support systems. Talking to someone definitely helped for me, but I don’t always tell people everything going on in my mind. Personally, I can be a little closed off. This is not a bad thing, I just have to make sure the feelings I am sitting with don’t become unhealthy and take over. For me, friends are a big support system. I love my friends dearly and when they say things like “I am here for you”, “You are so strong, you will get through this”, “You are so wise” it made me realize my own strength and how thankful I really am for all the people in my life.
Do you think educating siblings about eating disorders is important? Why?
I think it is very important. When your sibling is suffering with an eating disorder, education is the best way to get a small understanding of what they are going through. When your sibling’s eating disorder takes them over, it feels like they are a completely different person. This may be confusing and scary, so understanding why this happens is important. There are a lot of ways to learn more about an ED. I personally love books. Not everyone will have the same experiences as me, and so the best way to get an understanding of eating disorders is to do research and be properly educated.
What would you like to say to other siblings who might feel alone or scared?
You are not alone. I know this is said so often, but it is true and important. It is ok to feel scared and alone, but know you can get through those feelings. It is not your responsibility to take care of your siblings ED. You can care and show love for your sibling, but don’t feel pressure to feed into their thoughts and questions towards you, or feel like you can’t set boundaries if you feel uncomfortable. Setting boundaries is important. Your job can be to be their supporter, or whatever you feel comfortable with. You are strong and worthy. Your feelings and thoughts do matter. If you are struggling with everything that may be going on, then reach out to someone. Your feelings should never be less acknowledged than your sick sibling’s feelings. You are important. I know it is scary, but fight every day for yourself, and your sibling.
Sofia Castellanos is a young actress and singer. Sofia has a deep passion for the arts, and hopes to continue growing her resume! Aside from acting and signing, Sofia loves to be with her family and find ways to encourage and support others. To connect with Sofia, visit her Instagram: sofia_c0824