Friday 26/10/2024
PHOTO: Amber McLaughlin Photography
TEXT: María Sabaté and Lina Camacho
Caring for a loved one with a chronic and long-term eating disorder is an experience full of emotional and physical challenges. Families and caregivers play a central role in supporting these individuals, and while their contribution is crucial, they often feel ignored and overwhelmed. This article explores the experiences of caregivers and the lessons learned to improve support for both those affected and those who care for them.
ED and Families: The Emotional Impact on Caregivers
Caregivers of people with long-term eating disorders, such as Severe and Enduring Anorexia Nervosa (SE-AN), face a variety of complex feelings. Recent studies show that prolonged caregiving can lead to:
- Guilt and self-blame: Many caregivers feel they have failed in their responsibility by not being able to help their loved one recover, especially when treatment fails or the illness persists for years. Some regret not recognizing the warning signs sooner. In their own words, caregivers express the guilt they live with: “I know I have made mistakes or failed to do things that could have helped their recovery. I live with that guilt every day.”
- Exhaustion and despair: As treatment attempts fail and the illness drags on, it is common for caregivers to feel exhausted, with little faith in the available treatments. The constant burden of caregiving can lead to social isolation and feelings of helplessness. A mother expressing her despair said: “It was horrible. The feeling of helplessness, of abandonment… No one listens to you. (…) As a mother, you carry all the responsibility, and your needs are forgotten.”
- Internal conflict between hope and resignation: Some caregivers continue to hold on to hope that their loved one will recover, but many also face the reality that improvement may be limited. One caregiver described it as: “You always have a bit of hope, but it feels like it’s not going to happen. It’s very, very hard.”
Challenges in the healthcare system and treatments — the importance of support for families of individuals with eating disorders
On the other hand, caregivers also report that the healthcare system is often not equipped to address the needs of those suffering from a chronic eating disorder.
Often, access to good treatment can be complicated, and some healthcare professionals lack the necessary knowledge about eating disorders, which delays diagnosis and recovery and reduces the effectiveness of interventions. One caregiver shared: “I clearly remember a doctor talking to me as if I were a little child and saying, ‘No child will willingly starve themselves.’ I felt completely abandoned.”
Moreover, many treatments focus on weight gain but do not address the emotional causes of the disorder. This can lead to repeated hospitalizations and relapses. And although caregivers are responsible for many aspects of primary care, they are often not involved in treatment decisions, which is frustrating and makes them feel like they have no control over the situation.
Family and Eating Disorders: Coping Strategies
Over time, caregivers develop different strategies to adapt to the complexity of caregiving. Some of these include:
- Accepting the reality of the disorder: Many caregivers need to accept that recovery is not always quick or complete. This means adjusting their expectations and focusing on improving quality of life rather than seeking a “definitive cure.”
- Finding a balance between patient autonomy and caregiver support: Allowing the person to take more responsibility for their recovery can be difficult, but it is necessary to promote their independence. Caregivers learn to “let go” gradually. “It’s like a dance. Sometimes you step back a bit, and other times you get closer.”
- Taking care of themselves: Participating in support groups for caregivers can help them feel less alone.
The Need for a Change in the Treatment Model
For our upcoming day center program, we have adapted the treatment model to go beyond symptom elimination. We focus on expanding objectives and co-creating a personalized program, taking into account the needs of both the patient and their caregivers. We aim to promote hope, resilience, and a holistic approach to the physical and emotional aspects of the disorder.
We recognize that caregivers play a key role in the recovery process, and therefore, we understand the need to create specific programs for severe cases, involving both the patient and their families in the recovery process.
It is crucial to acknowledge that the process that families and caregivers of people with SE-AN go through is full of challenges and sacrifices. Throughout this journey, hope is intertwined with moments of great difficulty, creating a very emotionally difficult experience to manage. In our clinic, we recognize that caregivers often feel their efforts are not valued, as sometimes doctors invalidate their experiences. That’s why we offer specific therapies for family members and caregivers, providing them with a space where their voices are heard and validated. We believe that by integrating their needs into the process, we can better tailor treatments, improving not only the quality of life for those living with these disorders but also for their families.
References
- Burman, C., Rhodes, P., Vatter, S., & Miskovic-Wheatley, J. (2024). “I don’t know how, if, it’s ever going to end”: narratives of caring for someone with an enduring eating disorder. Eating and Weight Disorders-Studies on Anorexia, Bulimia and Obesity, 29(1), 50.