With millions suffering from an eating disorder worldwide, important strides have been made to include parents as partners versus the antiquated system of blaming them. As the field has moved forward, we’ve seen the positive impact as parents have been supported, educated and given a voice.
In 2017 Kym Piekunka and Bridget Whitlow, LMFT set out to expand on these impressive strides by reaching out to siblings. These sisters and brothers face many challenges that often go unrecognized or are unable to be attended to given the life-saving efforts focused on their sibling. Age and developmental level also play a role in the sibling’s ability to identify and articulate feelings and needs.
To better understand their perspective, we created a 28-question anonymous and confidential sibling survey. To date, we have 282 responses from around the world including the United States, England, Ireland, Luxembourg, Japan, Canada, Saudi Arabia, and Australia. Participant ages have ranged from 9 to 55 years old.
What siblings have shared has been compelling and confirming. While experiences did vary based on the duration, severity, and proximity of and to the eating disorder, they desire the support, education and voice their parents have been afforded. It is also clear, they have unique needs under these categories that are too important to ignore.
Acknowledging The Sibling Experience
“I wish her counselors and my parents asked me how I was doing. I wish I was given more opportunities to express my pain without contributing to another crisis in the house.”
(Female – 14yrs.)
Despite the strides to acknowledge families in the eating disorder field, the term “family” generally translates to parents. In this on-going survey, our findings suggest brothers and sisters are infrequently acknowledged in the process. They report a sense of isolation. They wonder where they fit within the family system and recovery process. A deep need exists to be heard but not at the cost of bringing more stress to the family. They are experiencing a multitude of often ambivalent feelings and believe they are left to navigate the experience on their own.
Answers to the What Ifs & How-Tos
“I was never given any instruction on what to do when he would be having meltdowns or fights over meals.” (Female – 18yrs.)
Throughout the survey, sisters and brothers requested to receive education about their sibling’s eating disorder, treatment, and its implications. They have a myriad of ‘How To’ questions regarding behavioral issues, impact, mood and eating patterns. It is clear they would like to help but feel powerless as they don’t understand why their sister or brother is sick. It is not always in the best interest to include the sibling in treatment. However, it is imperative to provide them with toolkits and resources as they face their new reality.
Defining The Sibling Role
“Involvement in the process & how to help. An understanding of their recovery pathway & more concise updates of their progress to help with constantly feeling anxious & powerless. Family therapy to help address a better environment to help my sister – everyone on the same page idea.” (Male – 31yrs.)
47.87% of siblings recognized the eating disorder before the rest of the family. Affected siblings often confide in their sister or brother and ask them to keep secrets. Siblings find it necessary to mediate when arguments arise. They witness eating disorder behaviors at school and at home not seen by parents. For these siblings, they express frustration as their perspective is not considered or valued. Siblings clearly have a deep love for their brothers and sisters. They want to help, but feel left on the sidelines. Without a defined role, they disclosed feeling loneliness, anxiety, fear, anger and a sense of powerlessness.
A Sense of Self
“My sister has chronic, intractable Anorexia with Binge Purge. I have tried so much over the years. How do you love and support someone without enabling the Eating Disorder? How do you cope with the guilt of feeling like you can never do enough? Do I live my life or try to save hers?” (Female – 35yrs.)
Given that some sisters and brothers are not yet in treatment and treatment itself can be lengthy, siblings often feel tremendous guilt for wanting to live their lives. They are in the midst of their own development and are maneuvering academics, peers and cultivating their identity. Some have developed their own eating disorder, are clinically depressed, experience anxiety and other mental health issues. What they notate is that their health, problems, success and needs are overlooked. They often don’t ask for what they need fearing to push already stressed parents over the edge. Despite this fear, they need to know from their parents that they have not been forgotten and that they’re cared about as individuals.
Connecting to Other Siblings
“There isn’t any support- especially for a male with a female sister.” (Male, 20yrs.)
The desire to hear from other siblings was clear. They are aware of the parent support and information but state it does not address the sibling perspective. As with all illness, the intense stress on the family is not avoidable. Siblings simply want a place to share their experience without worrying about hurting their affected sibling or parent.
What’s Next for Sibling Support?
Learning about the life of a sibling can no longer be pushed to the side. These sibling reports should be expected, acknowledged and supported by parents, educational websites and treatment teams.
While there are few resources available now, two websites offer sibling survey and we are working on developing more. The Sibling Survey is still open. If you are a sibling and would like to take the survey, click here