A message of hope

It was very clear before my daughter’s eating disorder diagnosis that she was struggling with food. When she started receiving treatment I was so busy juggling work and getting my daughter to appointments that I didn’t have time to take in the seriousness of this condition. I just knew we had to keep fighting for a way to recover from this. I never lost hope and always felt my daughter was a strong person and could recover from this disorder and return to a healthy weight. This was a long, hard journey, but with the right support it’s possible to come out of the other side. Paul

  • In most cases it’s the mental health issue that needs to be treated, rather than just focusing on weight.
  • It’s a slow process to recovery.
  • Listening to professionals can sometimes be challenging. Don’t be afraid of questioning.
  • Each person is an individual, and will have their own reason for having an eating disorder.
  • The biggest part of recovery comes from the person themselves. They have to choose to make the changes.

  • Always try to stay calm and to not judge or pressurise.
  • Don’t make food any more of an issue than it already is.
  • Encourage the person to do the things they enjoy and remember ‘who’ they are.
  • Be very patient, recovery can take time.

  • Receiving your autism diagnosis as it helped you understand yourself more.
  • With support, managing healthy exercise. This gave you a positive focus.
  • Also, having your own flat, with my support, gave you the confidence to eat, without anyone else watching over or judging you. We learnt to trust each other.
  • Not drawing attention to your eating and allowing you to choose what to eat.

  • Being judged.
  • Being weighed too often or focusing too much on numbers.
  • Being pressurised by standardised food plans and calorie counts.
  • Being told not to exercise.
  • People making inappropriate remarks about your look or weight.

I just knew we had to keep fighting for a way to recover from this

 

For more from Amanda and Paul find a podcast here using the QR code. 

Amanda and Paul talk about their experience navigating autism, family and anorexia

Eating Disorder Awareness Week: From a Carer’s perspective

This week, 23 February to 1 March, is Eating Disorder Awareness Week. Eating disorders are complex, often misunderstood conditions, and the stigma around them can make it even harder for people to seek help. By sharing a little of my experience as a carer, I hope to contribute to a bit more understanding, compassion and awareness of the support that is available.

Just over 10 years ago, I met my now-husband. Very early on, he told me that his sister – let’s call her M – has anorexia. Since then, he and I, along with the wider family, have been on a steep learning curve about what life looks like when someone you love is living with an eating disorder. Some lessons have been painful; others grounding; all of them have been important. I use the term ‘carer’ loosely. While M’s mum takes on most of the hands-on care, the rest of us support in the ways we can - and together, it feels right to describe ourselves as part of her ‘caring community’.

I still don’t know whether the general lack of understanding about eating disorders is a blessing or a curse. On one hand, I’m happy when someone has never had to face this experience. On the other, it can be disheartening to sit through conversations about calories, extreme diets or “being good” with food.

It’s not that I think healthy habits are wrong - far from it. It’s the throwaway comments, like “no thanks, I’m being good,” that stick with me. What does “good” mean? Does a biscuit make someone “bad”? Of course not. But for someone with an eating disorder - or someone in recovery - these small comments can create a sense of anxiety or shame. Even others in the room who have already taken the biscuit might suddenly second-guess themselves.

These comments are never malicious. They’re part of everyday language. But they are gentle reminders that our words matter more than we realise.

This year’s Eating Disorder Awareness Week theme is community, and that can mean so many things. For me, our community - the one we’ve built around M - is essential to how we function as a family.

M is at the centre, but surrounding her is a tight first circle: parents, my husband, and me (an honorary, self-appointed sister). Beyond that sits the wider support network: friends who know our history, understand the illness, and who offer us space to vent, laugh, cry, or simply step away for a moment. They’re the ones who help keep us all standing.

I genuinely believe that you can’t pour from an empty cup. Carers need rest, compassion and support just as much as those they care for. Community makes that possible.

Being a carer in any form isn’t easy. It’s emotionally demanding, often exhausting, and sometimes all-consuming. There are moments when your choices aren’t really your own, and you simply have to do what the situation requires.

But there are also moments of light. The game nights in lockdown where we bellowed with laughter. Our trip to Florida, running through torrential downpours and braving rollercoasters. The quiet car journeys for a coffee where big, scary conversations suddenly feel safe.

I never chose this path, but eating disorders don’t offer choices. They can affect anyone at any time. They can be manipulative, controlling and cruel - but that’s the illness, not the person you love.

The truth is: it is hard. But no one is expected to have the answers or the perfect formula. And no one has to face it alone.

We’ve worked closely with EmpowerED, an organisation focused on transforming how eating disorders are treated within the health system. They champion the voices of carers and people with lived experience to challenge stigma and improve support.

BEAT is another invaluable resource, offering guidance, support groups and helplines for anyone worried about themselves or someone they love.

Eating disorders thrive in isolation, which is why community is so vital. For me, one of those communities is here - in the workplace. It’s found in colleagues who stop to ask how your weekend was, who can read the look on your face and know it’s been a tough one, and who create a workplace where you feel seen.

If you’re looking for support - whether for yourself, someone you care about, or someone you’re worried may be struggling - please reach out. Help comes in many forms, and you deserve support just as much as the person you’re caring for.

Eating Disorder Awareness Week is a reminder that while the journey is hard, none of us have to walk it alone.