I've been contacted a few times by carers in various stages of helping their loved one with an Eating Disorder, and I can often feel the sense of desperation, helplessness, and frustration that I felt in the beginning.
As a result of that, I thought I would do a three-part blog series about the various stages of the Eating Disorder treatment process, and what to possibly expect.
Looking back, I always wished I had a guide or some insight into what to do or what the process looked like, so hopefully this will be useful to someone. Every individual and their treatment path is different, services in each area of the country will be different, but this may give you a glimpse of what the process might be like.
Part I will cover the early stages- how to start the process of getting help, and understanding what your loved one is going through.
Part II will cover acute/children's hospitals and psychiatric inpatient units, and some of the things I wish I would have known beforehand.
Part III will go over what to expect in the recovery process.
So here we go... what to possibly expect in the beginning and what to do about it.
Looking back at the journey of my daughter's recovery, I can truly say the experience changed all of us greatly. We are at a point now where I can look back and reflect, and hopefully offer some advice to others who are struggling.
Always start with your GP.
If you see even a few signs or symptoms of an eating disorder or are concerned, please do not wait. Early intervention is so important both for physical and mental health. The GP can refer your loved one to CAMHS.
The next step is the CAMHS waitlist- which I hope for everyone's sake is shorter now.
My daughter was on a waitlist for CAMHS for a year and a half, and during that time of waiting, I didn't quite know what to do to be honest.
We did have my daughter in private therapy, which was helpful. Some communities offer free therapy for teens, but I would really recommend someone who specialises in Eating Disorders as it is such a complex illness, if you can find someone.
I also started reading some books about Eating Disorders, but because of the stress I was under, I found it very difficult to concentrate. The material was obviously heavy and not an easy read. The little bits that I was able to read I did find extremely helpful. That being said, I was never able to complete even one book- I still feel a bit of shame about that to this day.
I found myself in emergency mode, and really just wanted somebody to tell me what to do.
I am more of a hands-on/interactive learner so would find things like courses, family based therapy, and support groups more valuable than sitting and reading information.
The only course in the beginning that I was eventually told about was a Bodywhys course called PiLaR. I completed the course, but at the time we did not have a diagnosis of Anorexia. I know it seems silly maybe, but I tend to think a little bit black and white, so without knowing a diagnosis going into the course, I still felt like I didn't quite know what to do to help my daughter.
That being said- if your loved one is on a waitlist for CAMHS, I would recommend you take advantage of the free PiLaR course as everyone gets something different out of it, and it is a good starting point.
There is also a Maudsley course available through Bodywhys that you can email to register for. This was one of the most practical things I did, as it really give me the skills I needed to help my daughter. It was only quite recently that I completed this course, but it really helped me understand and empathise with my daughter and what she was going through.
It was the first place I truly learned that Eating Disorders are not in fact about the food, but about what is going on inside. This was incredibly helpful for me to reshift the focus from food and eating to support and encouragement.
The course gave me more confidence and it was nice to connect with other carers dealing with the same issues. Eating Disorders can be very lonely, and the reminder that I was not alone in this was very comforting.
Meal coaching was another support that I found to be one of the most useful. We had one meal coaching session with the CAMHS community team, and the rest took place in a CAMHS inpatient facility.
Before doing this, meal times were incredibly difficult. I would get inpatient, because I could not understand why it was so difficult for her to eat. I would get frustrated by the amount of food wasted. These sessions gave me the tools to support and encourage her to eat. It has been over a year since I attended these sessions, and I have it down to a fine art now. I can tackle meal times with so much confidence it's unbelievable.
That being said, it was probably close to 2 years by the time we went to GP and the time we got meal support training. That's one change I would love to see made immediately to services offered to parents and carers, as it is so incredibly important.
I would recommend learning more about the Eating Disorder voice to help you understand what your loved one is going through. I did not initially understand Anorexia as a mental illness, and as a result I could not best help my daughter in the beginning.
Once I understood that Eating Disorders are more about what somebody is thinking or feeling rather than food, it changed my perspective and put me in a better position to help. Here are some tips I learned that can hopefully help you. It sure helped me avoid a lot of frustration during meals:
Avoid focusing on the food. Talk about something interesting, like their favorite topic, current events, sports, music, friends, school, pets, etc.
Be kindly persistent. Gentle persistence can lead to a few more bites, and the body needs every ounce of energy it can get for nourishment and recovery.
Learn to recognize body language or signs that your loved one may be shutting down or disengaging. Acknowledge that you can see something is bothering them, ask if they are okay or want to talk about anything. If they don't, remind them that you are there to support them, and are ready to listen whenever they are ready to talk.
Try talking about something light. Try sitting in silence. Try a supportive shoulder touch, back scratch, or any gentle physical prompt to bring them back to the present, if they are comfortable with it. Try a distraction like playing a game, listening to music, or watching TV.
Avoid talking about weight, food, diets, and physical appearances.
Avoid words and phrases that may be triggering, like "You're looking well."
It is easy to get frustrated in the beginning as you're learning new skills. Walk away for a few minutes if you need to, and make sure to take care of yourself when you have time.
I would also like to say to be kind to yourself. We are all imperfect people, learning something new, and coping the best we can with a very difficult situation. Sometimes you will say the wrong things, sometimes you will try and fail. But as long as you are there with your loved one, trying, improving, learning, supporting, and encouraging every step of the way, that is what is important. There is no such thing as instant success. Recovery is not linear, and it can be difficult, but recovery is possible, so hang in there.
So to recap, in the early stages:
Contact Bodywhys for help and advice, or to register for PiLaR or Maudsley.
Read and learn as much as you can, if you have the energy. If you check out the resources page, there are links to booklists, online videos, and active waiting resources.
Practice different communication and distraction techniques.
Take care of yourself.
Everyone's situation is different, so once your turn comes up in CAMHS I can't say what will be offered to your loved one. Possibly therapy, a dietition, occupational therapy, medication, referral to a specialist ED team if one is available in your area, a recommendation to go to A&E, or being put on a waitlist for an inpatient unit.
My daughter did not receive therapy when her turn came up in CAMHS, which is what I was hoping for, so please be prepared that it may not be a possibility.
She was referred to an inpatient unit, so Part 2 of this series will cover the general hospital and inpatient experience.
I have written this from a perspective of a carer, but if you are reading this and happen to be a sufferer, please remember you are worthy enough to get help, and you are worthy enough to eat. You are dealing with something very difficult, but recovery is possible, and there are people who care. Please don't be afraid to reach out to family, friends, a GP, or a helpline for support.