Eating disorders are complex as they manifest not just physically but also mentally. The patient often resists help, professionals may not be fully equipped to handle the situation, and practical advice is scarce. It’s crucial to gather as much information as possible at the beginning to understand the challenges you are facing.

• Anorexia and Bulimia are not just about eating habits; they are profound mental health issues. The physical damage is only one aspect of the illness. Their starving bodies play tricks on their brains, leading to severe mental health challenges. This condition consumes individuals, exhausting both their bodies and minds. Treating the physical symptoms alone is insufficient; the mental aspect must also be addressed. Tragically, patients not only suffer from the physical damage but also face the risk of taking their own lives due to the overwhelming mental strain.

• One insight I gained is that eating disorders can cause hidden damage that lingers long after apparent recovery. When the body lacks essential nutrients, organs, including the heart, can deteriorate. I once read about a recovered patient who tragically died of a heart attack years later. This shows the importance of ongoing monitoring for patients, even after they seem to have healed. It’s crucial to ensure that both their physical and mental health are closely watched to prevent long-term complications.

The mental health aspect of eating disorders can profoundly isolate sufferers, especially from the family and friends who desperately want to help them heal. The disorder masquerades as their best and only friend, the one thing they believe they can trust. It’s like a devil in disguise, constantly deceiving them. Your child may become a stranger to you, but it’s crucial not to let them alienate themselves. Isolation only strengthens the disorder’s grip. Engaging with them and maintaining a sense of normalcy can help combat the feelings of isolation and provide much-needed support.

• Positive Reinforcement: I remained calm and patient, avoiding confrontational approaches that might further isolate them. Instead, I left notes expressing love and support, constantly reminding them that we were still there, cared deeply and just wanted her to get better.

• Stay Connected: I tried to maintain a normal routine as much as possible, involving her in our plans and encouraging her to participate in activities they once enjoyed.

One of the hardest aspects of the journey was dealing with the GP and mental health authorities, who wouldn’t discuss anything due to patient confidentiality, as she was just 16. We were left completely in the dark about her care, including whether she attended appointments or how she was doing. The only advice we received was to try to encourage her to eat and to call an ambulance if we thought she was in immediate harm. No one ever asked us, as her parents, how she was actually doing, so it fell to me to take a proactive approach to ensure the professionals knew the full picture and not just what she was telling them. Do not leave their care solely in the hand of the professionals, below are the lengths and steps I took to ensure I was in some part involved in her care.

• Proactive GP Engagement: I immediately wrote a letter to the GP, explaining the situation and requesting that it be placed on file. I personally handed it to the manager to ensure it was received. When seeking advice, I would call or schedule appointments and ask hypothetical questions, rather than discussing specifics about my daughter, to navigate the confidentiality barriers.

• Monitoring: Each week, I emailed a detailed report to her caregivers, outlining the events at home. I included whether she had eaten, noted any changes in her behaviour, and described any new symptoms. Additionally, I reported any tablets I discovered, evidence of self-induced vomiting, and any letters or drawings I found in her room. This ensured the caregivers had a comprehensive understanding of her condition beyond the limited information she provided during sessions.

• Persistent: I often went to CAMHS in person and sat in the reception area until someone involved in her care would see me. During these visits, I would update them on what was troubling me or what was happening with my daughter. I joined several groups run by CAMHS, including a steering group that wasn’t specifically for eating disorders. This involvement allowed me to make other contacts within CAMHS and provided fresh ears to voice my concerns.

Despite the secrecy and isolation that surrounded her condition, I made sure that those she interacted with regularly or had good past relationships with were well-informed. This way, they could keep an eye on her and respond to any concerning signs or behaviours.

• Involve Key People: Informed friends, family, and teachers about her condition and put together documentation on symptoms and risks, educated them and enlisted their help in monitoring and supporting my child. Educated them on specific signs to watch for and when to obtain emergency help and kept them informed every step of the way.

• Engage with Professionals: Stay persistent in your communication with healthcare providers. Join support groups, connect with other families, read relevant books, and have helpline numbers readily available. You know your child better than anyone, which is crucial; your insight into how they react and what works best for them is invaluable in their care. Professionals may often suggest leaving everything to the experts, but in my experience, this led to major setbacks and strained our relationship further. It will require strength, but please, always speak up.

It is impossible to monitor your child 247, you will also not know their mental health state, so it is really important to keep their environment as safe as possible.

• Safety First: Remove any potentially harmful items from your home, such as medications.

• Promote Hope and Recovery: Share inspiring recovery stories and leave positive literature in your child’s room. Show them that recovery is possible, and support is always available. I would leave notes, small gifts of items she used to love, I would also send random texts or emails.