I have experienced first hand the medical system supplied to help young people with eating disorders and I can tell you this:
Okay. Maybe I am being a little harsh, but large elements of it sucks.
When I first realised I needed help, I visited my doctor and explained, in a rather emotional babbling way, that I wanted help. He was great. He was understanding and caring. I was unhappy and it was affecting my eating. I still wouldn’t completely admit that I had relapsed. I had told myself that if I could just access some therapy, then my eating ‘issues’ would sort themselves out.
He referred me to Compass, a part of the NHS which looks at an individual’s case and decides when and how the person will receive help. I was put straight through to the Child and Adolescent Mental Health Service (CAMHS), where I was assigned to a counsellor, dietician, psychiatrist and two nurses from the Reaching Out Service, who are there to try and prevent someone under CAMHS from hospitalisation. The nurses visit you at your home and can support your meals if you need it. I was immensely lucky to receive help so quickly and rapidly I became aware that my eating was a massive problem that wasn’t just going to dissappear with time. I needed ti recover.
Initially I did not appreciate the ROS team as much as I prehaps ‘should’ have. In retrospect, they took neccessary precautions which potentially saved my life. It had felt like they had barged into my home and told me that I had to stop all the things I enjoyed, like ballet and work but in reality I could not sustain this lifestyle. I came to terms with this over time and started to appreciate the ROS team a little more.
However, over time they have been more of a struggle, than helpful and advisory. They had told my parents that they would recieve support to help me through recovery but despite my parents requesting this serveral times after the inital offer, it was never supplied. This bothered me because I knew my parents needed some guidance in helping a 17 year old through all of this, just as much as I did.
To further my disliking for the ROS team, I constantly felt misunderstood by them. I spoke to one of the nurses about an issue I had with my balance – I kept losing balance and falling over – and she said it was because I was drinking too much water, which was a problem I had when I first came to CAMHS. I assured her that I only drank when I was thirsty now and it was not to surpress hunger. She then text me to say that I had to stop drinking too much, it was severely dangerous, implying that I was over-drinking and not telling her the truth. I felt completely unheard and untrusted. I am aware that EDs ‘make’ you lie and denial is common but I had spent so long trying to prove to the nurses that I was on the right track, I was fully committed to recovery. They evidently still didn’t believe me and I was exhausted of having to prove anything to anyone other than myself.
It only grew worse. As I committed to the Minnie Maud guidlines and started experiencing Extreme Hunger, I found myself rapidly gaining weight. When I stepped on the nurse’s scales one week, her response only fed the demons that were running through my brain. Wow. That’s a lot of weight to gain in one week. Gee. That’s more than weight gain in Inpatient. You know you don’t need to gain this fast, right?’. Somwhere in there she said some positive things about how great and persevering I was being. How I had really chucked myself into recovery. I didn’t care. My brain only really wanted to latch onto the negatives. The following week, I had gained even more than the previous week. Oh. Let me just check what you weighed last week again. Nope. You’ve definitely gained thaaat much. Have you started on a little exercise yet? Prehaps just a bit of walking everyday? And you said you were on 3000, uhuh? Well take that down to 2700 now and then we can look at maintainence diets and set points soon! I couldn’t quite believe she was saying this to someone with and ED. Everything I was believing in to recover, I began to question. How was I suppose to start eating 2700 when I ate well over 3000 a day? How was I supposed to start exercise again when I didn’t even have to energy to get off the sofa half the time? My demons started that familiar stupid little chant again: pft. You don’t have an eating disorder. You are way to lazy and eat way to much for that to be the case. They were wrong of course because, I wouldn’t even have those thoughts if I didn’t have an ED.
I was so angry and the nurses for making me feel this way. I’m still sitting here writing and saying to myself that maybe I’m in the wrong and that the nurse was right, I have no reason to be upset about the situation. But… How could they say all of this to someone with and ED and think it is okay? Because its not. If I was in a less strong place, I don’t know what would have happened. Would I have taken her advice? Would I have become exercise obsessed? Would I have just ignored my EH and lived in starvation mode? Would I have relapsed? I don’t know but I hate that they didn’t make my weight gain easier. They made it uncomfortable and I felt judged. The last thing someone with an ED in recovery needs.
Following some reassurance from a good friend also in recovery, I decided to send CAMHS a letter requesting to no longer see the ROS team and briefly said that I was not happy with the service I was provided with. I also said that if the wished for further information and feedback, they could try contacting me about it.
I feel its important to give feedback because the only thing worse than experiencing this, is knowing that lots of other young people are also receiving this for ‘support’. I want to be able to do what I can to prevent this.
I could go on all day about bad experiences I’ve had with the NHS with my ED but I don’t have enough time and I think you grasp the idea. I would just say that I am still immensely grateful for the NHS and I have received some brilliant help from them throughout my life. However, mental health is their fall down and for me, its not just the medics themselves who should change, it is society as a whole. We have a stigma around mental health which saddens me greatly, and although this is changing, as a result the government aren’t funding training in mental health. Consequently, people like myself are left with inadequate support.
What support is available to you for your ED?
Have you had any bad experiences with services supplied to you to help with your ED recovery?
Are you comfortable talking about mental health?