Eating disorder work is hard work!! I will not lie. It takes skill and patience, lots of practice, and even more self-reflection.
There is so much to learn. Eating disorders are very complex illnesses. It is important to have an understanding of all of the systems it affects.
The biological, neurological, psychological, social, and spiritual. Understanding how one affects the other and your role as a practitioner can guide the rest of the team into creating a successful treatment plan.
It does take a team! We need expert professionals and to use social supports! Family, friends, lovers, workmates. The more support, the better.
Collaboration and sharing ideas, having an individualised approach, listening, learning, sharing wins, and catching when they fall. Yep, recovery is a journey, and doing it alone is especially hard.
I have lived experience with an eating disorder. When I think about it, I probably had an eating disorder from a young age. It was probably ARFID as I don't remember body shape being too much of a concern, but I hated myself, and my body image was not great! I remember staring in the mirror, thinking, "why did I have to be born so ugly". My diet was very beige—potatoes, eggs, chicken, chips, weetbix and milk. I did like sweets and chocolates also.
It was not until I started to go through puberty and I started to get attention from people I really started to get insecure. I was a competitive swimmer from about 7. With 9 sessions per week and many, many hours swimming up and down the black line.
I remember the older boys would tease me, call me "Barbie" I guess they might have been complimenting me in some weird way, but to me, that was the worst thing in the world. It just seemed like they were torturing me because I would never be pretty and lovely like Barbie.
I totally understand the feelings that my clients tell me when they are really hating on themselves. If you get a compliment, you feel that people lie to you, so don't trust them. The absolute fear about putting something new in your mouth. The fear of what the food might do to you. The texture in your mouth, worried if it will make you gag.
I remember at school camps. I would cry at mealtimes, making up a story that I missed my cat to get out of eating. I absolutely did not want to eat the scary food the parent helpers were making for dinner.
I am very familiar with social isolation, social anxiety, the turning up to a birthday party but turning around before you walk in.
The comparing yourself to every single person you walk past.
The obsessive exercising
And feeling like no one understands you.
Then at 14, I had a restrictive/ binge/ purge eating disorder that lasted about 10 years until the behaviours stopped. I had at least another 7 years of ED thoughts without behaviours. Going to Uni in my 30s and studying nutrition and dietetics really helped my brain let go of the ED.
I did get "help" for my ED when I was 14. A referral to the South Island Eating Disorder service totally helped!!! It helped me get better at my eating disorder. I wanted to be skinnier in group work because the other girls were so skinny, and of course, I felt like I was not deserving of treatment.
My food diary made me more restrictive, the less I had written down meant I was winning.
I don't remember anyone commenting that I rode my bike about 15km to my therapy sessions. Nor my massive bike rides where I would ride the entire perimeter of Christchurch.
I remember doing CBT- but I did not what cognitive meant. I was sure as hell not going to ask. I did not want to look stupid. So I didn't really understand the meaning of what we were doing. Should a 14-year-old be expected to know? I don't remember doing FBT. And I certainly do not remember my mother or father helping me eat.
With all of that aside, I am now a pretty well-functioning adult, and I know that eating disorders are not a choice and that my personality traits can be used for good.
But this still does leave me vulnerable to being hurt when bullied and take it too hard. I can still ruminate about things if something is not right. Those traits don't go away; I have learned to manage them and make them work for me.
So here I am now, running my own private practice, helping amazing beautiful souls try to let go of the eating disorder. I want to think I give them hope as I do self disclose my own story. I think this provides a trusting therapeutic relationship.
But it gets hard!!! And we need a team. I have been pretty good at reaching out to get help. I have made some amazing contacts and work alongside some amazing people. All who have the same mission. To help people recover from their ED.
However, I am alone in my practice, and I am a dietitian. I am skilled in my job as a dietitian working with EDs. I can provide some pretty awesome sciencey education about the body, malnutrition, how re-nourishing with food is so amazing, and helping people through the process of their bodies changing and coaching them through it. Unpacking food rules, working with parents and other supports, and finding the motivation to push through when tough.
But sometimes, I can't help. Sometimes people need someone more skilled than I. But this is where we have a problem. There is a waitlist for public services. It is horrifically long. Many of my patients do not even get accepted on the waitlist, this could be because they are of Pacific Island or Maori descent, and their BMI is "normal" even though their weight loss is 20% of their body weight.
It could be because they have a diagnosis of autism and ED- so it is too hard for the "specialist service to treat".
They might have used up their lives at the service and been given their advanced care plan, told to sort out their funeral because they are going to die.
I also could see how stressful it is for the really young kids coming in to see me. I am sure it can make their anxiety 100x worse. (which is why I will now do home visits for the little kids)
So I started a parent/ career support group. We meet every fortnight, and we get together to support and share stories. The parents I work with are the most amazing passionate lovely caring, people! And the ones who have been in it for years are very well-versed in the clinical guidelines and the treatment of EDs, and are very awesome at helping the new parents.
The reoccurring theme over and over again is that the system lets them down!
I get emails and phone calls so frequently from distraught parents who cannot get the help they need while watching their children waste away. There is no one to help, and no one seems skilled enough to treat complex cases, so they discharge with an advanced care plan. I want to ask the question, would you help someone depressed plan their funeral? I do wonder about the ethics of this.
I have tried to ask for help from the general manager of the local DHB, who replied, "there is nothing he can do" I try to work in collaboration with the eating disorder service, but they do not want to work with a private practitioner.
So I have sourced mentors from the US to help me guide my practice.
This is where the petition arose from. One lovey parent asked me to help her with a petition. She just could not understand why her daughter had been declined treatment despite being in the depths of her eating disorder. Of course, I said yes. She organised the media, the petition, and calling up the MPs, and I just showed up and said what I have been experiencing.
I am writing this 2 days before we present this petition to parliament. I hope they listen and hear the cries for help. I have got stories to share to prove the point.
But a major disappointment happened yesterday. A colleague publically shamed me on her social media with a following of 20K and also on the NZ non-diet HAES health professional Facebook page and her Instagram.
She commented that I am "self-promoting" and that there are enough experts in NZ.
When I commented on her public post on the Facebook page defending myself, she deleted it (true influencer style not to have an opposing view to hers, Pete Evens style maybe?)
I do not understand why she would do that. I had invited her to my parent support meetings when the media was there and asked for her support in other areas, and she has either not replied or declined.
This is someone I thought to be a leader in this area. And I am utterly disappointed that she has not listened to my calls to collaborate, to listen to the absolute shit storm we are facing here in NZ.
And when I replied to her private message, and yes, I was upset in my reply, she has now removed me from the Facebook page where I could source some support from other ED professionals.
Why do I do this work?
I do it for the families who are struggling.
I do it because I believe everyone can recover.
I do the advocacy because I know we can do better, and we need to keep looking to improve our work. We don't need to reinvent the wheel. Just look to other countries that are doing it well.
Life with an eating disorder is hell on earth.
Let's give our kids a chance.
I will make a separate post with the cries for help