Disclaimer – this blog may contain material which might be upsetting or unhelpful for people who are recovering or struggling with this an eating disorder. It will contain descriptions of unhelpful behaviors. Please consider this before continuing to read. The aim of the blog is to raise awareness of what someone with an eating disorder might be going through on a daily basis. I appreciate there are more extreme behaviors than the ones I have described below, at the moment I am not as unwell as I was previously, but still very much in the grip of this mental disorder.
I remember 2 years ago when this week came up at work, I had been restricting food for a period of time, I hadn’t acknowledged I had a problem, but I do recall reading the literature and starting to identify with it. I’ve written a number of posts previously about anorexia, one in which I explain the problem another where I talk about recovery and more recently my struggles with getting over this illness
I wanted to write a post about how it feels to be battling this illness as I am not sure it is always fully understood by the outsider. I am very good at putting on a front for people I don’t know well. I am by no means as unwell as I was last year but I am by no means better.
I wake up before my alarm again, I’m exhausted and don’t want to get out of my bed into the cold. My average amount of sleep at the moment is 4-6 hours a night. My body is hungry and it’s recognizing that I should be up and looking for food and not sleeping. Lack of sleep can play all sorts of tricks on the mind, it can make you feel confused and bewildered, I often hear unexplained noises or feel paranoid. Once up I spend time trying to find something to wear for work, it has to be smart, but can’t be tight on my stomach, I often resort to leggings. At the moment choosing clothes is agonizing as I’m having to trying to find warm things I can layer up with. Once clothes have been selected I have to use the toilet, then strip off to weigh myself. The number will dictate my day. I won’t be happy if it has gone up or down. I had managed to reduce how often I weighed myself, but I am currently in the middle of a relapse and can’t seem to find a way of cutting down.
I go down stairs to eat my breakfast I have carefully measured the night before, if I don’t do this there is a risk I simply won’t have breakfast. The feelings of guilt begin. The discomfort of having food in my stomach. I’ve given myself the small allotted amount of food I can have and scrape the bowl until it is completely clean. I don’t have a fear of food, I like to eat, the fear and obsession is around the numbers. I will often lick the contents from bowls to make sure I have had every last allotted calorie. I often have to use the bathroom before leaving the house due to digestive distress, I seem to alternate between IBS symptoms of constipation or diarrhea.
I begin my walk to work in the freezing cold, the cold hits my bones and permeates through me. My hands and lips feel painful and numb. I am late, but struggle to rush because my chest hurts. I cannot be late for work, my autism dictates that I have a strong sense of moral obligation which means I feel unable to let people down. I have to constantly distract my thoughts away from food throughout the day, ignore conversations which often seem to centre around food. I sit near the desk where cakes and biscuits are regularly placed. It’s torture not being able to join in. I am regularly offered things to eat and wish I could just be honest with my colleagues about my illness. I am sure they must know as I look underweight and had a long period of time off from work due to this illness. I regularly have to ask for fans to be turned away from me or the radiator to be turned on. Asking for anything in life is painful for me, I don’t know why. I often can’t ask and will just suffer in silence. I feel I have to eat a small amount in work as I need to keep my concentration up and don’t want to let people down. Eating just a small amount at my desk is agnoising and sitting with feelings of fullness afterwards can at times make it hard to hold back the tears. Work snacks are carefully thought out low calorie items. I look at other peoples arms and legs and mine feel huge in comparison. I have to get up to go for a wee nearly every hour and feel unbearably self conscious about having to walk across the room in front of everyone. I feel disgusted by my reflection in the mirror, my face feels huge.
I push my lunch break as late as I can as I find that if I eat too early the hunger is unbearable. I go for my lunch break and find people are having a meeting where I have my lunch. My lunch consists of soup every day, a habit I won’t deviate from. I can’t eat at my desk and can feel myself visibly trying to shrink into myself so I won’t be noticed. I’m already sensitive to noise due to ASD, but anorexia has magnified this sensitivity, I find it overwhelming and hard to focus when I’m back at my desk.
I finish for the day and want to take the longer walk home which involves walking through fields which are often isolated. The dizziness/chest pain is so bad I opt for the more populated route home, staggering back like a drunk, needing to stop at regular points to get up the final hill, I keep my phone close to hand just in case I fall. My muscles hurt and buckle at times. I am not quite sure how I manage to make it home, I feel vulnerable and confused, but guilty I’ve not completed a longer walk. My fitbit has buzzed at the magic number though so I am at least able to stop walking. Once home I feel compelled to look after my family despite being tired, there’s also a compulsion to burn more calories. I make their tea and lunch for the following day and despite being weak from hunger I need to get in the bath and into my pajamas as I can’t bear the feeling of a days worth of food pushing against my clothes.
We sit down for tea, I don’t eat the same as my family, I have the same thing every day. I insist everyone is at the table for a specific time, another rigid behavior developed during this illness. I keep reheating my food as I have a compulsion around food being the right temperature. I feel hungry all evening and long for the days where I could happily snack without a thought. Evenings are often dogged with emotions of feeling low. I feel terribly guilty about the fact I haven’t been able to sustain the recovery I made in hospital last year. I insist on doing all of the clearing and tidying up. I obsessively watch documentaries about food as if to torture myself even more. I have a continuous monologue in my head telling me I am worthless, disgusting, a let down, telling me I should hurt myself or take myself away from others so they don’t have to worry about me anymore. The lack of certainty about my treatment plays on my mind a lot. It’s not that I want to end my life, I just can’t bear my life as it is and feel without hope. I will often sit and add up the calories consumed in the day, over and over.
I used to love reading books, I have a pile of books waiting to be read, but I cannot concentrate sufficiently to read them. My life before I became unwell revolved around the outdoors, climbing, outdoor swimming, caving, body boarding and hiking. I can still manage to walk, but can’t do anything else. Most my voluntary commitments have fallen by the wayside. It must be so frustrating and incomprehensible to an outsider how I can put myself through this and why I am unable to recover for the sake of my family or to get back to the things I love and make me happy. It’s incomprehensible to me to. I have tried so hard. I feel brain washed and unable to make the right choices. Going through the recovery process again having been through it a number of times already feels like a mountain too hard to climb alone. Campaigns like the #whywait campaign are fantastic as it’s important for people to get help before they become so unwell behaviors are entrenched and harder to break, however it’s equally important that the help is timely and appropriate for the individual or there’s a risk of more harm than good being done.
I wouldn’t be just about surviving as I am at the moment without the support of family and friends. So for this #eatingdisordersawareness week I wanted to end my post by giving thanks to family and carers for all that they do to support me/us without our difficulties. It means everything to me.