Severe and Enduring (Chronic) Eating Disorders
Eating Disorder Week 22-28th Feb 2016
If someone has had an eating disorder for more than 5 years it is usually described as severe and enduring. Evidence shows it is much harder to recover from a long term eating disorder, however it does happen and maintaining hope can be very important for everyone.
Families report that living with someone with a severe eating disorder is frequently very challenging. The challenges can be many. Firstly the difficult behaviors caused by the eating disorder can be extremely wearing for all family members. Additionally the family’s sense of hope for recovery and improved wellbeing for their loved one can fade. Families describe a range of emotions including sadness, frustration, anger, despair, grief, “at their wits’ end”, fear and many more. Families also report a sense of isolation not only from their loved one but from their own friends and social contacts. It is also common to feel that there is little help or support offered by the health system either for the ill family member and/or for the family. Families can also feel very frightened … it is reported that anorexia has the highest mortality rate of any mental illness.
What You Can Do:
Recognise the Huge Contribution you are Making as a Family.
Caring for someone with a serious long term illness is extremely challenging. Caring for someone with a long term mental illness can be even more so. Caregivers of other illnesses receive significantly more care/compassion/empathy than you are likely to be receiving.
It is likely that without your love and ongoing support your loved one would be in a much worse situation. It may be that few understand the “real picture”. Find ways to acknowledge the wonderful contribution you are making and support each other.
Try to Keep Communication Channels Open with Your Loved One
Whether your loved one lives with you or not try to keep communication open. This may be very challenging.
Support Each Other- Try to Work Together as a Team
Families report the strain of the illness can be very destructive on families. Try to support each other-eg make a point of noting kindness, helpful behaviour of others. Try not to blame.
Establish some common rules/strategies (eg. agreement about when you can meet to talk about concerns with your loved one)
Make sure it is not around mealtimes or other stressful times. Agree on some common ground rules eg no raised voices.
Discuss with other families members what would really help you now.
Get smart about having a break / take turns- you deserve it and it may well help your loved one.
Check out financial help to get the support you need.
Be realistic about what you can achieve both for your child and for yourself. Caring for someone with a serious illness is a huge task…you mightn’t be able to manage much else…
Try to find something to laugh about
Seek Help- MHM Wales is here to help and support your recovery
Remember you are not alone…Literature and clinicians can seem reluctant to discuss chronic illness and its impact but unfortunately there are many families out there who are experiencing similar challenges that you are. Contact MHM Wales and we can support you and help you contact others.
Get support/help from someone you can trust and who has some understanding of the real challenges you are facing. Our Sorted group welcomes all contact us to find out more firstname.lastname@example.org
Seeing a skilled therapist may be helpful to discover strategies to make living with the illness more manageable. You may be able to identify behaviours that are intolerable and develop strategies to establish boundaries to make daily life more manageable for everyone. MHM Wales offers a low cost Counselling Service to find out more contact email@example.com
It will not only help your loved one and her/his emotional wellbeing but it will help you. Hope and staying positive is very powerful. It will help you much more in managing your daily life than negative emotions eg despair.
However if you feel you are seriously down/depressed seek help sooner rather than later. Don’t beat yourself up…get help. Check out our finding connections workshops on our events page or contact us on firstname.lastname@example.org for tips on how to help yourself.
Motivation to change
Often motivation to change is very difficult. David Epston (author of ‘Biting the Hand That Starves You’) has a section on his website www.narrativeapproaches.com on ‘Archives of Resistance.’
Archives of Resistance may be helpful for people with eating disorders to gain insight, hope and ideas for taking action. Its online format allows individuals privacy and independence and may offer a fresh approach to people who have not found other approaches helpful.
Families report high levels of guilt regarding their loved one’s illness. It can feel overwhelming. Remember – you are not to blame for your loved one’s illness.
The Academy of Eating Disorders (Internationally recognised clinical leaders in the field) clearly refutes long held but unsubstantiated claims of family dysfunction that may cause eating disorders in it’s positional paper published in the July 2009 Journal of Eating Disorders (http://www.maudsleyparents.org/images/Role_of_Family.pdf). It reinforces the importance families can make in the recovery of their loved one.
Unfortunately some clinicians may still hold outdated unhelpful attitudes towards families and may openly or covertly blame the family for the illness. Families may also feel that clinicians may be shutting them out of treatment of their loved one. In most circumstances this is unhelpful. Current best practice encourages the inclusion of the family in their loved one’s treatment. If you would like your voice to be heard then contact our independent advocates and we will help you understand your rights and be listened to.
Contact us on email@example.com
Remember: Never give up hoping and working towards recovery!