‘Your condition was very acute’. The words my dad and step-mum said to me last weekend, such an innocent comment so why has it upset me so much?
Yes I want to be better. No I don’t want people to see me as disordered. Yes I’m glad people see me as a smiley person… but sometimes I want my struggle to be acknowledged. Is over 6 years of my life being overshadowed by an eating disorder simply acute? I can understand that only the beginning of my disorder is remembered by those around me who only saw the external weight loss… but does my dad not know that things have never really got better? The discomfort and hatred I feel towards my body has never faded, nor the whirring calorie calculator in my head, I have never felt fully recovered so why is it assumed that I am? The voice of an eating disorder inside my head has silenced my real voice.
The day my dad said this to me, I reacted by purging my lunch. It was almost like a vain attempt to prove that things hadn’t got better and that I am ill, chronically ill. Of course i didn’t tell him I did this… just as I won’t tell him that this evening I have binged and purged 3 times within a few hours, I entered a subconscious zone opening cupboards and the fridge to satisfy my unsatisfiable stomach. Then regret, guilt. Then self-induced vomit.
The problem is that this dominating part of my eating disorder is secret, I can’t admit to this disgusting habit so how can I expect my dad to know the torment I go through. He can’t see that food is not enjoyable, it is a substance that may taste nice but it is also a substance that provides guilt.
I don’t want to be an ‘inspiration’, I don’t want to be ‘strong’ because I’m not either of these things. I have not beaten my eating disorder and if the way I live my life is what others aspire to have then that would make for a melancholy world. I am lucky to live with my mum who has been there by my side for the past 6 years, who has seen that the eating disorder’s grip still hugs me tight, and she doesn’t assume. If you know someone who struggles or has struggled with their relationship with food, don’t assume, allow them define where they are on their journey, allow them to struggle if they need to and make sure you support them if you can.
So how does it feel to be in that limbo of ‘okay’, but not good? In recovery but not ‘recovered’ from Anorexia Nervosa? When nobody can see the struggle because you look well, yet even when you try to explain it or reach out, people turn away. When a world of restriction turns upside down, it becomes a realization that food tastes good, that recovery is worth it, but one does not know how to accept this. Food has been the perceived enemy for so long, the thing that causes the dreaded weight gain. This limbo of recovery provides sudden clarity, that an eating disorder is not about food, weight and shape, but at the same time it is all about food, weight and shape.
Recovery can occur in a variety of ways, it can include one minute of being adamant that one will lose 5kg, but the next decide to eat well, be ‘strong not skinny’. It can include a sudden gorge on all the foods that one has deprived oneself of for so long. It can include this gorge to bring up so much guilt, that one transitions to a diagnosis of bulimia.
I apologize for a more personally written post, but if one person reads it – I hope to feel some relief to finally share my constant whir of thoughts… I am recovering, not recovered.
Every day, I remember lying in that hospital bed, completely confused as to how I got there, but totally aware of my body sinking into the bed. The smell of paper towels, the smell of fortisip supplements staining my mattress and skin as I tried to hide it, the humiliation of shitting myself because I took too many laxatives. An NG thrust through my nose as I screamed and cried. Friends and family visited and left crying, but all I felt was numb. I could not cry, because I didn’t understand. I hadn’t reached my goal weight, so how could I be ill or underweight? The only comfort I felt, was that my heart rate was at 29bpm, I felt like I’d achieved something, in some sick way that I still don’t understand.
The worst memory is seeing my mums face, when she told me I had a month to live if I didn’t accept treatment. That image will never leave my memory, how much I’d hurt her, knowing now the turmoil I put her through. So I was flown to London to an ED inpatient unit. I now cannot stop thinking, how every other weekend she lost her free time off work, to fly to London and take a train to see me just for a few hours. How she lost weight herself because of stress, and how she had no time for herself, yet all I felt at the time was jealously, that I was in a unit to gain weight and she was free to lose weight. How I still returned home and put her through hell, hid food, deceived her, shouted at her, made myself sick in front of her, sat staring blankly as family members cried when I wouldn’t eat, avoided good hygiene, touching toilets in the hope of catching a vomiting bug, all for what? To lose weight. To somehow achieve the unachievable.
The guilt never fades.
Every day I’m so conscious of my body, noticing every jiggle, all the loss of muscle because my weight goes up and down like a yoyo, muscle is the first to go so I never sustain it… constantly comparing myself, never being thin, but not even looking slim because I’ve lost the muscle. Depression sinks in. I just sit or lie in my bed for hours. Even though my bmi remains on the cusp of healthy – I only see the fat I’ve obtained from lack of activity, so I just look a normal size, leaving everyone oblivious and confused by my distress.
Nearly very night for the past 3 months, I have binged and purged. Purged so violently that my throat has not stopped burning, I have grazes on my knuckles from my desperation, burst blood vessels around my eyes, under my tongue and down my cheeks and neck from the straining to get out every last morsel… my teeth are starting to recede as the acidic vomit has worn down my gums. My fingers are stained with smell as I’ve pawed through my vomit just to make sure I’ve purged everything. Further memories are triggered of going into every food shop in a train station, spending over £50 on food because my friend hadn’t turned up, knowing full well I was going to purge it all in the station toilets.
I hate myself every day. Not just for looking the way I do, but for not being strong enough to recover, for having 5 years of my life taken from me and ruled by thoughts and calculations of calories, weight, shape and body.
For what I’ve put my mum through.
I have remained a healthy weight for a large percentage of this time, yet these times have been the worst – because everyone thinks you’re over it, that you’ve come out the other side, but it’s just a hidden demon. A dirty secret that nobody wants to hear, because loving food is normal, but having a life ruled by it’s dictatorship is not. A life where the number on the scale or the reflection in the mirror each morning, is what defines whether a day is good or bad.
Each day, my thoughts are about food, weight, calories and how I look. I wander around food shops the majority of the days, just to look at food I wish I could eat, trying to tell myself I can do it but if I do, I know full well I will throw it up. In the eyes of the unknowing, I am healthy, I look like a normal 20 year old. Yet I cannot concentrate, unless it’s about what I have eaten or what I will eat that day. I cannot shift the memories, I cannot let go. Oh I so want to let go, if only my eating disorder would let me go.
Christmas is upon us, a day known for merriment, family, laughter and food. It marks a special occasion not only for religion but for bringing a society together, where our charitable inclinations increase and acts of kindness are abundant. However, behind all this, there is a hidden world, where the idea of Christmas can represent an occasion of fear, anxiety and ambivalence. For those with autism, the lead up to Christmas can be a bizarre concept; for not everyday is Christmas so why are we decorating, advertising and exciting ourselves? For those with social anxiety, the idea of a room full of people, shops swarmed with the last minute purchasers can initiate the physical and emotional feelings of panic. Depression has leached the enjoyment out of life, and that doesn’t change for this one day out of 365. Christmas may evoke feelings and memories of pain, loss or abuse, everyone has an individual story to tell and it cannot be assumed that this festive season is jolly for all.
The intense focus on food is particularly challenging for one with an eating disorder, the fear of family members piling calories onto your plate, adding up to what is no longer a serving of nourishment or pleasure, but a numerical, quantitative pile of anxiety. Eager family members laughing around the table, looking expectantly for satisfied faces and yet the disordered response is a tentative one, avoiding complimenting the food due to an infestation of guilt that one could simply allow or accept that they can enjoy this nutritional necessity. The whole day becomes a nightmare of thoughts- resulting in tears, binges, purges, restrictions, anxiety and self-doubt, to a point that the very acceptance of presents becomes a guilt-driven activity. After the mechanical action of eating, the anxiety doesn’t dampen easily, the day will hold fears of having eaten too much, gaining weight, continuing to eat uncontrollably and results in a day lost in a world of clouded vision, an unintentional, self-centred bubble of worry and rumination.
Even if someone is struggling, people can be helped to find enjoyment from Christmas. If you have a loved one who is struggling in any way with this holiday- talk to them before the day. Put a plan in place. Whether it be discussing the meal with them, choosing certain foods, firming a safe place they can go if it’s overwhelming and reassuring them that it’s ok to need to ‘escape’ the family laughter and loud jokes. Make sure that person knows who they can talk to on the day, make sure they feel safe, that they know they are cared for and that even if they just show their face for a short while, they deserve to enjoy Christmas. Whatever an individual likes about Christmas, get them to focus on that and even if it’s just for a moment. Christmas holds some universal enjoyment, and please remember if someone is withdrawn at Christmas time due to mental illness, it is never their fault.