Just when you think you’ve covered all the awareness weeks another one comes along from the shadows, brandishing itself on social media. For this awareness day I’d like to write about my hospital admission to an Eating Disorder unit, of which I have just been discharged from. I don’t think a huge amount is known about the experience of eating disorders. If you’d asked me about them 5 years ago I wouldn’t have had a clue about what someone with an eating disorder might experience. If I’d been asked how long someone might take to recover and how someone would be after a hospital admission I’d probably have had the assumption that they would be ‘fixed’ post admission. This is far from the truth.
I am on the autistic spectrum, I have a diagnosis of Aspergers Syndrome. I’ve had previous hospital admissions which have failed. On my first admission to an eating disorder ward I was completely overwhelmed, panicked and wanted to flee straight away. I couldn’t flee as I was under section, so I did the only logical thing I could and stopped eating and drinking as I just couldn’t see the purpose of anything. This time round things were different. I was seeing someone in the community who worked hard to help me prepare for the admission. We planned it really well and I was able to visit the ward before going in. I also compiled a list of questions which were answered in advance of my admission. When I break from routines there is a period of time when I need to find new ones and this is often the period when I am most likely to flee a situation if it’s all too much. At the start of my admission staff took time to show me things quietly to give me time to adjust. I’ve learnt that to feel safe and reassured I need to ask questions about things I am not clear of. I was lucky that the other patients on the ward were kind,patient and caring and they would frequently answer my endless questions about day to day things so I could understand what would happen. I remember one very unstructured creative group where I could feel the panic rising, a fellow patient turned to me and suggested some things which I could try, which was so helpful in reducing the urge to flee. Alongside the routines of the ward I found my own routines, a bath and hot drink at the same time every night, the best time to ask for my PRN medication, what order to make my breakfast in and set distraction activities at set times.
In the first initial weeks it was all a bit of a blur, I was anemic, very tired and all my joints and muscles hurt. All the exercise I’d been doing on minimal nutrition was catching up with me. I had only been sleeping for a few hours a night at home, but all of a sudden I was needing at least 10 hours a night and even that didn’t feel like it was enough. The number of meal times a day was relentless – 6 times a day, with observations in a small room after each meal. I initially started off on a meal plan which involved 3 meals and pudding, but the amount of food all at once was providing hard for my body to process and often meant I would feel very dizzy and unwell afterwards. It was also awkward watching others have a snack 3 times a day whilst I only had a drink. I moved over to the other meal plan of smaller meals and snacks which made it a tiny bit easier. I remember the horror of eating the meals in the initial stages of admission – even taking a sandwich out of a packet was frightening. Trying to get through a bowl of cereal felt like such a mountain to climb. It’s still frightening now, but I have become stronger at managing these feelings. Sitting with others at a table was really hard for me, I didn’t know what to say and felt like I had to constantly screen my conversation so I didn’t say the wrong thing. Most of the time you either aren’t hungry or you are physically very full, often experiencing nausea when eating. Being confronted by a large meal when you physically don’t want it is horrendous, not even taking to account all of the thoughts in your head telling you that you shouldn’t eat or negative things about what it might do to you. There is an expectation that you complete every meal within a set time scale, which can be really difficult especially if you are full and eating slowly.
As you start to eat more suddenly your emotions come back. That comfortably numb bubble that the eating disorder has created is no longer there. You feel everything. For me my emotions coming back felt like I was fighting a battle with a very angry malevolent creature. It was telling me that I was an awful person for eating, it told me to hurt myself, it told me that my life wasn’t worth living and that I should walk in front of a car and end it all. It felt like it was out to get me. At one point I remember wrapping myself up tightly in my duvet with my headphones on loud just to somehow stop myself from acting on the instructions of the voice. Each time I fell there was a staff member to catch me – they would listen to me over and over again, offer support and would always do what they said they would do. The comfort this provided during these darker times was essential as it’s a really lonely and frightening place to be. I took great comfort in the garden also, a sanctuary of flowers in pots created by patients present and past, making the most of what could have been a bleak space. I’d often sit there listening to the music or the birds when my emotions got on top of me and at times it would really help take things down a level.
Although I came home yesterday the physical discomfort of bloating and weight gain remains. I am told it can take months to settle. Throught my admission I experienced slow digestion, constipation and diarrhoea. I became quite familiar with the bathroom! Clothes start to become tighter and having a distended stomach makes it hard to find things which comfortably fit – it reminded me of dressing for pregnancy. This is something I will need to continue to sit with, which will be harder when I have to return to work and find suitable ‘office wear’ which doesn’t make me uncomfortable or make me self-conscious about my weight gain.
During the admission there is also a requirement that you attend all groups. This is especially hard to begin with when you don’t know anyone and you can barely keep your eyes open. Groups can also throw up difficult emotions which can be really hard to sit with alone afterwards. You may have to tackle yet another meal after just spending an hour talking about really difficult things. I found the groups quite stressful as I can often interrupt others or can become very focussed on what I want to say. I will ruminate for ages after a group about what I’ve perceived myself to have done wrong. Managing my behaviour in groups was hard, but I did manage to stay in the majority of groups which was something I could then apply in the community to attend a mindfulness group provided by the autism service which I’ve wanted to go to for a long time, but lacked the confidence to attend.
There were a number of moments in hospital where staff members have said just the right thing at the right time. I’ve often been impressed by the skills of the Health Care Assistants, never being quite sure if they are a nurse or a HCA, which is indicative of their knowledge and hard work. Just before I left yesterday I was having a big wobble about going home and spent some time talking with a HCA. It was exactly what I needed in that moment, she was able to gently challenge some of my incorrect thoughts and say just what I needed to hear in that moment. I’ve tried to keep a visual memory of the times people have said things that have been helpful, so I can throw it back at the disordered thinking, like a lit hand grenade – I have the armoury now to give me the best chance of fighting this battle.
There’s an assumption that I should be ‘happy’ or ‘excited’ to be home. I don’t feel either of those emotions at the moment. I am scared and nervous about my ability to continue with the plan without intensive support. Stepping back into an environment where you have been most unwell is pretty disconcerting – being hit with all those memories of desperation, discomfort and unhelpful behaviours. It’s hard to not listen to the voice telling me to deviate from my plan, it’s still raging away. I know that had I not had an admission I wouldn’t have been able to get through recovery on my own at home, the physical and mental symptoms are so powerful it sends you running to the hills and back to your eating disorder – the thoughts in your head tell you that you won’t feel the pain and discomfort if you don’t eat, you won’t feel the mental torment of your emotions. What it doesn’t recognise is the happier place you were in pre eating disorder or how disconnected you are from life with an eating disorder. I have weathered the storm in hospital and now I need to continue to sail forwards navigating my way through the daily difficulties. Each time I don’t listen to the voice in my head I am winning the battle. I liken it to the snake in the Garden of Eden.
In this blog I have mostly talked about eating, but exercise was also a key element of my difficulties. Coming into hospital and having to ignore the daily compulsion to exercise was very difficult. I sold my fitbit for charity whilst in hospital which is a step towards breaking this compulsion. Even typing this now the voice in my head is telling me I am lazy and I should be doing more. We are all told to exercise as it’s healthy. I love the outdoors and being in the outdoors for me it is key in managing my emotions, particularly where I have been in intense social situations such as work. Separating out what is disordered behaviour and what is just me is difficult. Getting enough rest for my body to focus on repairing itself in recovery is also a challenge. When you are able to stick to meal plan your head is telling you to get back to everything you did before immediately, but in reality this is the worst thing you can do as it will then impact of weight gain (potentially creating weight loss) which will then effect thoughts, as the lower your weight is the more likely those intrusive/rigid thoughts will return.
So for this mental health awareness week I’d challenge you to have a curious mind, ask someone what their illness is like, validate their feelings and emotions, don’t assume that a discharge from hospital is a good thing for someone – it might be monumentally challenging and perhaps the most difficult part of their recovery. Just listening to someone can be the most powerful thing you can do for someone and may be just what they need.