Having recently started a new role in eating disorders, and with Eating Disorders Awareness Week just around the corner, it seemed like a good time to collect my thoughts about working with people with eating disorders.
The majority of my eating disorders experience has come from working at an eating disorders day service and supporting occupational therapists working on eating disorder units (EDUs). I’ve also worked with people (men and women) with eating disorders who are not under the care of specialist services – for example, in acute inpatient mental health units, learning disability services and residential/supported accommodation.
Here are the top five lessons (in no particular order of importance) that I’ve learned so far while working with people with eating disorders:
1. Subjective experience of occupation matters.
Eating disorders affect every part of a person’s life. New occupations may emerge from the eating disorder, and the meanings of occupations can change (Elliot, 2012). People may feel guilty for engaging in enjoyable, restful or self-nurturing occupations and may avoid occupations or social situations that involve food. They might feel driven to be over-productive. And even though occupational therapists are trained in enabling people to participate in everyday activities/occupations (WFOT, 2012), we are at risk of failing to fully comprehend the challenges or meaning inherent in an individual’s occupations if we don’t take the time to fully explore them.
If there is one thing I’ve learned, it’s the importance of understanding every individual’s subjective experience of occupation. A collaborative approach to assessment is vital. Explore with people why they struggle with certain occupations or what motivates them to engage in others (even – or perhaps especially – if you see them as ‘unhealthy’ or ‘maladaptive’). Find out if challenges relate to occupational disposition (how a person feels about engaging in an occupation), occupational understanding (knowledge or understanding of methods or resources relating to an occupation), occupational performance (their ability to actually perform the occupation), or a combination of the three (Park, 2014). Having a thorough understanding of where the challenges lie and why mean you can work with the individual to develop a plan that is meaningful and relevant.
For more information on occupation/occupational therapy in eating disorders, visit the following links:
- The Hidden Depths of Occupational Therapy in Eating Disorders
- Exploring the Dark Side of Occupation
- Call for #EDAW15 [Eating Disorders Awareness Week 2015] Volunteers – Eating Disorders and Occupational Therapy Q&A
- What Do You Know About Eating Disorders and Occupational Therapy [#EDAW14]
- ‘Self Defeating Meaningful Occupation‘ and ‘Pro-Eating Disorder Websites – a Personal, Occupational Perspective‘ blog posts by @pd2ot, which explore eating disorders from an occupational perspective
- ‘”Dear Occupational Therapists” – Responses to #OTalk’s “When Occupational Therapy Goes Wrong”‘ – @lapsangsusie’s account of her experiences of occupational therapy
- Elliot, M. (2012) ‘Figured World of Eating Disorders: Occupations of Illness‘, Canadian Journal of Occupational Therapy, 79(1), pp. 15-22
- ‘Occupational Therapy for People with Eating Disorders‘ written by Joan Chipman, occupational therapy coordinator at the Center for Eating Disorders in Maryland, USA
- ‘Eating Disorders’ Chapter by Laura Lock and Genevieve Pepin in the Occupational Therapy and Mental Health book
2. What you say and how you say it matters.
In my experience, you can discuss just about anything with people if you go about it the right way, but it is also very easy to (with the best intentions) say the wrong thing, especially if you are inexperienced or don’t know the person well. If you are new to eating disorders, time spent learning about helpful language is well worth the investment. Trust me.
The articles below are a good starting point, and you can also ask individuals with eating disorders or your colleagues what they think is/isn’t helpful to say. As always, it is important to get to know the individuals you are working with – what is helpful for one person may be unhelpful for another – so open conversations about language/helpful strategies are the way to go.
There’s no shortage of articles on the topic:
- 10 Helpful Things to Say to Someone With an Eating Disorder
- 13 Things Never to Say to a Woman with Anorexia
- 7 Things You Don’t Say to Someone with Anorexia or Bulimia
- What NOT to Say to Someone Recovering From an Eating Disorder
- 12 Things You Shouldn’t Say To People Recovering From Eating Disorders
One of the most useful approaches I learnt was motivational interviewing. There are many books and YouTube videos on the topic, and you may also be able to find face-to-face training. Visit the following website for an introduction to the skills:
- The New Maudsley Approach: Practical Skills (Motivational Interviewing)
As important as language is, the most important thing is your relationship with someone and your willingness to support them. You may say the wrong thing (we all do!). Someone may prefer for you to be silent, but still want you there with them. Or you may be in a situation where you have run out of things to say, and all you can do is sit with someone. Often, your actions or tone of voice mean more than the words you use.
3. Loved ones matter.
Wherever you can, involve a person’s loved ones in their care. Even something as simple as listening to a loved one’s concerns can make a big difference. Ask who a person has in their life and how they feel about their families, partners and friends being involved in their care. Find out what support is available locally for families, partners and friends and share this information with them.
Here are a few resources:
- Book: Skills-based Caring for a Loved One with an Eating Disorder: The New Maudsley Method
- The New Maudsley Approach website
- Toolkit for Carers download at the KCL website – the animal analogies are particularly useful
- Maudsley Parents
- FEAST (Families Empowered and Supporting Treatment of Eating Disorders)
- Carers UK
4. Always hold onto hope.
The theme for this year’s Eating Disorders Awareness Week is ‘Early Intervention’. I’m really excited about the results of the First Episode and Rapid Early Intervention for Eating Disorder (FREED) trial from South London and Maudsley NHS Foundation Trust that showed the benefits of speeding up eating disorders treatment, and can’t wait to see the findings from their new FREED-UP trial.
While early intervention is vitally important, the majority of my experience has been in working with people with severe and enduring eating disorders. Regardless of the severity of someone’s illness, or the extent of their prior contact with mental health services, continue to hold hope that they can get their life back and achieve their goals. Because people can and will surprise you.
5. Make sure you look after yourself.
Eating disorders are tough. They are tough for individuals, loved ones, and care teams. And it will be tough for you. Everyday can feel like a battle between the person’s eating disorder and healthy self, and the physical risk posed by eating disorders can be frightening for everyone involved. The work requires patience, persistence, resilience and reflection.
There will be times where you feel like you are not good enough. Other times, you will feel strong emotions of anger, sadness, frustration, fear… you name it. You may even find that your own relationship with food is affected.
Working with people with eating disorders, you need to look after yourself. Use supervision and support available to you, including any staff support/supervision groups. And practice what you preach – invest time and effort into your own wellbeing and occupational balance.
For me, working with people with eating disorders has been an incredibly fascinating and rewarding experience. And I hope if you work with people with eating disorders, you will find the same!
Other useful resources:
- Academy for Eating Disorders
- Men Get Eating Disorders Too
- b-eat Eating Disorders Charity
- NICE Guidelines (updated guidelines expected May 2017)
5 accounts to follow on Twitter:
If you or someone you know are affected by eating disorders, you can contact b-eat (the eating disorders charity) via the following methods:
Telephone: (free, and open 365 days a year, 4pm-10pm)
Adult Helpline: 0808 801 0677
Youthline: 0808 801 0711
Adult (over 18): firstname.lastname@example.org
Youthline (under 18): email@example.com
What are the top five things you think people should know about working in the field of eating disorders? Are there any other resources you would recommend? Leave a comment below!