Supporting a person with a longstanding ED can encompass many unique challenges, oftentimes due to the length of time a person may experience disordered eating and body image issues. Providing treatment aiming at ‘full recovery’ may be overwhelming for man individuals with a Longstanding ED, particularly if they may have lost hope in the effectiveness or accessibility of treatment options.
Many individuals with a longstanding ED are very capable, maintaining an occupation, engaging in life and are motivated to improve their quality of life. For others, having a longstanding ED can have a significant impact on their physical health, psychological and emotional health, their occupation and social connections.
What are the Challenges?
Carers shared about the challenges they experience supporting someone with a longstanding ED this session of Conversations with Carers. Some of the main challenges included:
- The ED is in control, world revolving around it
- Trying to maintain communication with their person
- Person not responding to treatment options
- Navigating their person’s super-sensitivity
- Person’s eating is very rigid, with no variety
- ‘Picking up the pieces’ when things go wrong
- Person feeling helpless, exhausted from the ED
- Intense feelings of fear
What’s Helpful?
Carers spoke about the value of continuing to be hopeful, even after a long time supporting their person with a longstanding ED, as there is always time to turn a corner and make a positive change. Particularly when your person feels stuck, it can be helpful to consider a variety of small changes that they could make, and collaborate with them to try to implement one. A helpful phrase to keep in mind when you or your person feels stuck is to LEAP: Listen, Empathise, Agree and Partner. That is, try to meet your person where they are at with compassion, agree on one thing to try, and work together.
Affirmations are very valuable when supporting a person with a longstanding ED. An affirmation is when we try to focus on the effort a person is making, rather than whether or not they achieve an outcome. Reframing negative situations in a positive way can be really helpful when navigating the often critical ED voice. Sometimes your person may even tell you “you annoyed the ED when you said that.” This can be positive, as whatever you are doing is working. If you are feeling stuck, try to look out for the ‘green shoots,’ any sign that your person is listening to their own voice.
A very valuable idea from carers is to come up with a phrase, and put it somewhere in the house where you and your person will see it. An example of a phrase that is helpful for other carers is ‘There is no judgement.’ This can help you, the carer, to keep going even when it is challenging, and it can be helpful for your person, particularly when they are battling intrusive ED thoughts. Another phrase that carers offered each other was ‘Numbing the pain also numbs the joy.’
Carers highlighted the value of keeping the lines of communication between you and your person open. If this is difficult to do verbally in person, there are many other ways in which you can communicate. For instance, texting can be helpful when managing the tone of what you are saying, or using notes as encouragement around the house can help boost your person’s self-esteem.
Finally, it can be valuable to keep in mind that there is no perfect carer. It is important to take care of yourself, and having people you can talk to, and things to do to help you cope. Many carers find attending Bodywhys Support Services very helpful, especially when getting to talk to other carers in similar situations, who may be offer some advice. Another great idea when you are struggling to navigate a particular situation, is to look at online videos of people who have lived experience.
FAQ
- When to step back?
- There is no right or wrong answer for this. Oftentimes it can feel like walking a tightrope, afraid of taking a wrong step and making things worse for your person. Carers highlight the importance of trust between you and your person before deciding to tentatively step back in certain situations.
Carer’s Quotes
“As a carer for someone with SEED – Severe and Enduring Eating Disorder – I have somehow managed to hang on to HOPE. Hope that tomorrow, or even later today, something or someone will manage to break into her thinking. Am I as crazy as the ED is? Close on 20 years of this, but then not every day is identical, some I give up on trying to make a difference, others are perhaps worse because you can see the tiny flame ignite but not last and your own helplessness barrels in along with the effort of having to come to your own acceptance… for now.
The beginning was much harder. The slow dawning that the services that were there were very inadequate or non-existent. The helplines that were never available when you had time. The realisation that this illness required a massive amount of one to one interaction. The impact on family relationships. The cost factor. An urgency in you seeing the amount of money being paid out but little or no improvement taking place. Dealing with the resentment factor within yourself, but knowing deep down that this would create a barrier to the person’s recovery.
A greater understanding of the illness has helped me immensely. Online recovery coaches have played a most helpful role in this. The positive effect of Covid bringing Bodywhys Support Group online and into my life, and introducing me to the Maudsley Carers Course. This fuels my hope and soothes my thoughts in its basic message ‘you can’t change someone else’ – but your influence can make a difference.”
