Transformation Partners in Health and Care > News > Understanding eating disorders: The journey of an expert by experience and tips for recovery

Understanding eating disorders: The journey of an expert by experience and tips for recovery

Eating Disorders Awareness Week takes place from 27 February to 5 March –  a time to raise awareness of eating disorders and disordered eating in the UK. We spoke to Emily,* a young woman living with an eating disorder, to discuss her experiences and provide guidance for others. Emily has been managing an eating disorder for several years and is passionate about spreading awareness and supporting others who may be finding it difficult.

Why is it important to recognise and raise awareness of male eating disorders this ‘Eating Disorders Awareness Week’? 

Eating disorders affect people of all ages, genders, ethnicities, and backgrounds. There is a misconception that men don’t experience eating disorders. They can. It’s important that we change this narrative, so that boys and men with eating disorders can get the treatment and support that they need and deserve. With the current narrative, stigma and shame can make it hard for men to speak up about their struggles and hard for them to access specialist eating disorder services. They may not be aware that what they are struggling with may be described as an eating disorder. Stigma may prevent them from speaking out about their struggles.

It has also been suggested that the current assessment tools used to assess for a possible eating disorder are gender-biased, with some of the questions perhaps being more likely to pick up on female-specific signs and symptoms. I hope that raising recognition and awareness of male eating disorders can bring about some of these necessary changes.

How do you cope with triggers and challenging situations related to your eating disorder?

For an individual with an eating disorder, there can be numerous triggers and challenges, with each of these being unique to the person. It is important to think about how to manage these, as some can be avoided, and some can’t.

For example, where possible, I only spend time with people who have a ‘good enough’ relationship with food and their bodies. Repeated comments about dieting, calories, fitness, or body ideals aren’t helpful for me. This might mean slowly separating myself from certain individuals, but in general, I feel grateful to be surrounded by many wonderful people.

When faced with triggers or challenges, I remind myself that my eating disorder journey is my own. It doesn’t matter what other people are doing or saying, I just need to focus on what I need to do to keep myself healthy. It can also help to be prepared. For me, that means always having some safe snacks on hand. I notice that if I get hungry, I get anxious and I struggle to make decisions. This can fuel a cycle of difficult thoughts, so I try to prevent that from occurring. Not everyone needs to eat every few hours, but at the moment, I do, and that’s ok. I have also learnt that it can be helpful to talk to someone (a friend, partner or family member) if I am facing or have faced a particularly difficult situation. Whilst others can find it hard to understand, I find it helpful to voice my thoughts. Sometimes we problem-solve a scenario, sometimes we consider ways to manage it, and sometimes we consider ways to let it go. Either way, I do believe that a problem shared is a problem halved (or at least, reduced).

What role have self-care practices played in your recovery from an eating disorder, and would you recommend any?

Self-care for me means learning to slow down, and let me, not my eating disorder choose how I would like to spend my time. I have found it helpful to discover activities that I can immerse myself in – this helps quieten the eating disorder thoughts and provides opportunities to find joy in the little things.

During intensive eating disorder treatment, I discovered a joy in sewing. It’s a hobby that requires concentration and was a learning curve for me, but one that produced tangible outcomes (such as homemade gifts for friends) and one that I felt a sense of achievement in doing. Whilst it’s no longer something I have time to do on a daily basis, I can see how this practice was helpful at a particularly challenging time.

I find it hard to settle, so discovering a new series, and watching it without distractions, has been helpful. It’s easier for me to watch something if the decision (about the series) has been made. Deciding on a new film when I’m feeling anxious just feels too much. I recommend yoga as well, as I find the synchronised movement of body and breath really helpful. This doesn’t have to be a full-blown class – just a chance to stretch, flow and pause within a busy week.

Can you share any advice for friends and family members who want to support someone with an eating disorder?

Be patient and be kind. Eating disorder recovery is hard and the journey can take time. From speaking to friends and family members about my own recovery, I know that frustration, fear, anger, sadness and overwhelm were all common feelings. I can only imagine how hard it must be to watch someone you love struggle with an eating disorder.

My advice is to be gentle but firm. Let them know that you are there, that you understand it is difficult and that you believe they can get through this. Don’t blame your loved one. It’s not their fault. Help them to recognise that it’s their eating disorder, their maladaptive way of coping, that needs to be changed. Its not them. If needed, seek support for yourself. There’s no shame in needing help to be the helper.

Finally, it can help to do some research into what an eating disorder really is and what tools / techniques might help the individual with an eating disorder. Misconceptions can be harmful.

What kind of support and treatment have you received that has been helpful to you?

My journey with eating disorder support and treatment has had its highs and lows, but there are some things that stand out along the way as particularly helpful. Firstly, having a dedicated professional who truly cared for me as a whole person and believed in my ability to get to a better place. I have seen many different professionals along the way, often in too frequent succession, but finding the ones that stick with you and believe in you means a lot.

Whilst immensely challenging, I also believe that an all-encompassing form of support, that involves psychological, nutritional, occupational, and medical support, is most valuable. Eating disorders of multifaceted and impact individuals in many ways. I needed to begin to understand why my eating disorder had developed and what was keeping it going. Simply being told to eat more and let go of my eating disorder behaviours (coping strategies) wasn’t going to make me better. This can be a painful process and one that takes time, but it is a process that I believe is crucial to recovery. Only when we are aware of our true selves can we begin to change the things that are causing us harm.

Finally, I want to remind anyone struggling with the later stages of recovery that you are still worthy of support. Just because you may no longer be in a medically compromised position, that doesn’t mean that your struggles are any less worthy. Having sought support further down the line, I have found it really helpful for my struggles to validated by friends, family and health professionals.

What would you say to someone who is overwhelmed by an eating disorder but doesn’t know where to turn for help?

Please don’t struggle in silence. An eating disorder is an isolating and lonely experience. The idea of getting help can be terrifying, daunting and also confusing, but it is always worth taking that step. Things can change.

My advice is to go to the GP, perhaps with a friend or family member, who can speak for you when the eating disorder voice tries to get involved. Tell them that you are struggling and tell them all of the things that you and others have noticed. Ask for specialist support, not a generic leaflet on eating well or staying healthy. Eating disorders are series mental health conditions that require specialist input. It can help to do some research beforehand as well.

Charities, such as Beat, provide excellent information on what to say during that first consultation and what avenues of support might be available. I highly recommend their ‘First Steps’ GP leaflet. Charities are also a great place to go to for support, in terms of advice on how to access treatment and as a place for a compassionate ear. Helplines, run by qualified professionals, can be a source of comfort throughout an individual’s recovery journey.

Finally, I want to encourage anyone who is struggling to seek out multidisciplinary support. Eating disorders require multidisciplinary support. Whilst the eating disorder might appear to be about food, dietetic or nutritional support alone isn’t the answer. Psychological support, to help an individual understand why their eating disorder developed and what is keeping it going, is key to recovery.

*A pseudonym has been used to protect the anonymity of the person with lived experience.