Eating disorders are complicated because they affect both the body and the mind. People struggling with these conditions may resist help, and sometimes professionals do not have all the answers. Practical advice can be hard to find. That’s why it’s important to learn as much as you can early on to better understand what you are dealing with.

• Anorexia and Bulimia are more than just problems with eating; they are serious mental health conditions. The harm to the body is only part of the problem. When people do not get enough food, it can affect how their brains work and cause major mental health struggles. These illnesses can take over a person’s life, leaving them physically and mentally drained. Treating only the physical symptoms is not enough—the mental side needs attention too. Sadly, the mental strain can be so great that some people may consider ending their own lives.

• I have learned that eating disorders can cause hidden damage that lasts even after someone seems to recover. When the body does not get the nutrients it needs, organs like the heart can weaken. I read about someone who had recovered but sadly died of a heart attack years later. This shows why it is important to keep checking on people’s health, even after they look better. Both their physical and mental health need to be watched to help prevent future problems.

Eating disorders can make people feel very alone, even from the family and friends who want to help. The illness can seem like their only friend, making it hard for them to trust anyone else. Sometimes, your child may seem like a stranger, but it’s important not to let them pull away. Being isolated only makes things worse. Staying involved and keeping things as normal as possible can help them feel less alone and more supported.

• I tried to stay calm and patient, avoiding arguments that could make her feel more alone. Instead, I left notes to show my love and support, reminding her that we were always there, cared about her, and wanted her to get better.

• I did my best to keep our routine as normal as possible, including her in our plans and encouraging her to join in activities she used to enjoy.

One of the toughest parts of this journey was dealing with the GP and mental health services. Because she was only 16, they wouldn’t share any information with us due to patient confidentiality. We had no idea if she was going to her appointments or how she was really doing. The only advice we got was to encourage her to eat and to call an ambulance if we thought she was in immediate danger. No one ever asked us, as her parents, how she was actually doing. So, I decided to take matters into my own hands to make sure the professionals had the whole picture, not just what she told them. Don’t leave everything to the professionals. Here are the steps I took to stay involved in her care.

• Proactive GP Engagement: I wrote a letter to the GP right away, explaining what was happening and asking for it to be kept on file. I handed it directly to the manager to make sure they got it. When I needed advice, I would call or make appointments and ask general questions instead of talking about my daughter specifically, so I could get around the confidentiality rules.

• Monitoring: Every week, I sent a detailed email to her caregivers about what was happening at home. I shared whether she was eating, any changes in her behaviour, and any new symptoms I noticed. I also reported if I found any tablets, signs of self-induced vomiting, or letters and drawings in her room. This way, her caregivers had a better understanding of her situation than just what she told them in sessions.

• Persistence: I often went to CAMHS in person and waited in the reception area until someone involved in her care could see me. When I met with them, I shared what was worrying me or what was going on with my daughter. I also joined several groups run by CAMHS, including a steering group that wasn’t just for eating disorders. Being involved helped me connect with more people at CAMHS and gave me new ways to share my concerns.

Even though her condition was kept private and she felt isolated, I made sure the people she saw often or trusted from the past knew what was going on. This helped them watch out for her and notice any worrying changes.

• Involve Key People: I told friends, family, and teachers about her condition and shared information about symptoms and risks. I explained what signs to look for and when to get emergency help, and I kept everyone updated throughout the process.

• Engage with Professionals: Keep in regular contact with healthcare providers. Join support groups, talk to other families, read helpful books, and keep helpline numbers close by. You know your child best, and your understanding of their needs is important for their care. Sometimes professionals may say to leave everything to them, but in my experience, this caused problems and made things harder between us. It takes courage, but always speak up for your child.

You can’t watch your child every minute or always know how they’re feeling, so it’s important to make their environment as safe as you can.

• Safety First: Take out anything in your home that could be harmful, like medications.

• Promote Hope and Recovery: Share stories of people who have recovered and leave positive books or articles in your child’s room. Remind them that recovery is possible and support is always there. I used to leave notes, small gifts of things she liked, and sometimes sent random texts or emails.