ED Awareness Week – My Story.
Note: This is just my story, I don’t mean to make any judgements, upset, trigger, offend, serve any agenda or push any opinion – just to share my experience and story, and encourage others to know it’s okay to talk openly about their’s too – no matter what the issue. Also I am aware that this topic needs to be approached with sensitivity and care, so there will be no “numbers” mentioned in this post and I am including a trigger warning now.
“Changing anything takes a great deal of courage. Just because something is the right thing to do, doesn’t mean it is the easy thing to do.”
This time exactly 8 years ago, in February 2010, aged 16, I experienced my first inpatient hospital admission.
In 2011, I was told that if I didn’t agree to a refeeding plan, I would be tube fed, and was pulled from school for two months.
In 2012, I thought I had reached the end, and was once again checked into hospital for several months in intense inpatient care, severely underweight, my stomach burned black from a hot water bottle, and with critically low levels of white blood cells.
I thought that this admission would mark my rock bottom. Then, in 2013, exercise addiction began, along with the insanity of “fruitarianism” and “the dangers of fats and protein.”
In 2014, I tore cartilage in my hip, and developed chronic gastroparesis.
In 2015, professors at Columbia and Barnard reported me to the health center. Later that year, I had two surgeries, on my hip and stomach. Struggled through my final year at college.
In 2017, I moved back to New York, and slipped back into old habits fast and hard.
Beginning of 2018. Some mornings I was waking up without feeling in my hands and arms. Drinking 3 to 5 cans of Sprite Zero and 6 strong coffees a day, eating tiny portions of oatmeal and veg. I would not step off the treadmill until I had burned 700-1000 calories, and reached my weekly minimum mileage, 6 times a week. Brain fog, insomnia, hyper metabolism, extreme highs and zombie plateaus, terrified of food, often not being able to string a sentence together at work meetings, sure at times that I would collapse on the street. Telling myself every single day that tomorrow would be different, I would change tomorrow.
8 years of this shit. So, now that we’re all “aware,” let’s move on.
I’m writing this post because it’s eating disorder awareness week. And I’m asking myself, is awareness really what we need? Awareness of what? That they exist? I think we all know they exist.
What we do need awareness of, is that things need to change. Support systems need to change. Help, resources and responses need to be different. But most importantly, the dialogue around and attitude towards eating disorders need to change. The taboo and the shame and the misunderstanding, all need to be “re-awared.” Instead, we need patience, understanding, willingness, emotional support, kindness and compassion. We need more conversation, more sharing, more talking. Because people die from this.
I’ve been pretty quiet about it these 8 years. I always felt it was a shameful topic, one which made the air freeze. Every hospital admittance was like a secret disappearance, and there was no way of knowing how to explain what was going on. There was no Instagram and Youtube, or even a smart phone camera, to document it all when I was 16. Taking a photo of myself was out of the question, even at my lowest weight.
It has nothing to do with weight and physical appearance. No before and after, “transformation Tuesday” on Instagram can ever portray the depth of despair which drives people with severe eating disorders to starve themselves.
We all have our ups and downs and challenges. Nobody’s life is perfect. Looking back now, I can clearly identify a time when I first developed insecurities. From the age of 3, I went through a horrific six years of chronic “separation anxiety” – I couldn’t be away from my parents at any moment of the day without breaking down in hysterical tears. Every single morning before school in kindergarten I would cry at the window watching my Mum leave for work, and I will never forget the overwhelming loss of control I felt when I was dropped off to school.
I didn’t understand why I felt like this. Sure, every kid cries going to school at some stage, but this was a major problem. It went on for years, every single day, until it just sort of…faded away. I was taken to psychologists, but never engaged with any of them. It wasn’t as if I was even particularly close to my parents. I was probably just a very sensitive kid, and wasn’t able to control my emotions.
But I was always made feel like there was something wrong with me. I was criticised for “carrying on like that,” and made feel utterly ashamed. I don’t ever remember at any stage being comforted or made feel safe – I remember teachers shouting at me in frustration, the bus driver physically dragging me into the school, and aged 5, the teacher taking away my lunch and locking me in the class at recess, because I took off after my father one morning after he dropped me to school. She put me at the top of the classroom and made me explain myself, in front of everyone, and said it was disgraceful behaviour. I was five. I remember that moment vividly. I was mortified. I guess I developed some sort of tough inner skin during all that – no other kid around me was dealing with this, and I sure as hell couldn’t explain it, so I gradually started to feel completely isolated and alone in every environment. No one was coming to save me, I realised. I was on my own. So I developed a “plough through life, trust no one” attitude from very early on – I couldn’t find compassion anywhere, so abandoned it.
I was still a pretty happy kid otherwise, very enthusiastic and passionate, pretty stubborn. I was always a bit different – read a lot, climbed trees, was happier with my imaginary friends than real people, so lived in my own world the majority of the time. But I was energetic and social too.
I hated secondary school with a passion. I couldn’t settle with any friend group, was bullied, felt constantly undermined and rejected, and had zero self confidence. I started to think that if I just didn’t exist, I would take up less space, and be less annoying to everyone else – that I just needed to fade away, and that way it might be easier for me to get through life then too. I just needed to shut up – my contribution to everything was irrelevant.
I was 15 when I started to cut out food. Another issue I had been dealing with was body image. I was always extremely skinny as a kid and ate like a horse. Around puberty and from all the sport I was playing, I noticed I was getting a bit muscly, though I was still quite petite. My mum constantly made comments about physique in connection with exercise. I was told to watch out about playing certain sports, which would make me bulky, which “wasn’t attractive for a female.” It was always referenced back to her own personal experience, and she always made negative comments about her own shape.
I don’t think I realised at the time how much this sank into me. Also, growing up I was always made wear “practical” clothes, and told that I couldn’t wear certain types of clothing or shoes I picked out while shopping because you “had to have long legs for them.”
So I started to watch everything I ate, cut things out, and started to purge anything I did eat. I quit all sport. Within a few months, I had lost a ton of weight. Life was about to get very ugly.
I was in 4th year. In February, after my 16th birthday, I was diagnosed with anorexia and checked into an inpatient program in hospital. It was horrendous. I left a month later feeling more angry, misunderstood and frustrated than ever, and stopped eating the minute I was discharged. Things spiralled downhill quickly and I became a walking zombie skeleton. The school refused to take me on a trip to Italy which I had been so excited for, and I completely broke down. The rest of that year, I lived a half life, my hair all fell out, I struggled through the summer, extremely underweight and constantly dealing with criticisms from my parents who would barely communicate with me – they needed to “disengage,” to “protect themselves.” The dialogue always ran along the lines of “ruining the family,” ‘selfish,” “manipulation,” “lies,” “self-centred.”
5th year brought on another severe relapse. On a trip to Lanzarote, people asked my Mum “what’s wrong with your daughter?” When I got back, my therapist told me I would be tube fed immediately if I didn’t agree to a refeeding plan. So I was pulled from school for 2 months, and spent the whole time either being served meals or sleeping.
The worst blow came in 6th year. I had been doing ok weight and food wise for about 8 months, but was still struggling with other issues. I felt helpless, couldn’t figure out how to fix things, didn’t think there was a way out, was drowning in unhappiness at school, and food restriction started again. I found a notepad recently, journaling one whole month of consecutive days eating only 100-200 calories per day. I almost died, and my stomach was burnt black from the hot water bottle. I was non-responsive in social situations at school, and had long withdrawn myself from anything involving friends and peers.
My family couldn’t keep me at home anymore, and I had to stop seeing my therapist – we realized we had reached a brick wall. I will mention that I received tremendous support from staff at my school at this time, which was invaluable. Getting a bed as an inpatient in hospital again was a frustrating process, but I was extremely lucky that the local psychiatrist could see I wasn’t going to last much longer, and got me a bed straight away. I said it to him straight: “I won’t last til next Tuesday.” And he responded, “I don’t think you will, either.”
I spent the next two – three months in hospital again. I won’t go into the details. It was one of the hardest, most emotional, and desperate experiences I have ever gone through. Everything was a black hole. I was so physically ill I wasn’t even allowed outside in the open air for the first two weeks – my white blood cells were nonexistent, and I buried myself in a bean bag, deep in my nightmare. Blood tests every single day, disgusting calorific meal shakes, meeting repeat patients I remembered from my last admittance and realizing I was one too. I hated being in that hospital. It was all terrifying at the time.
But I made it out. I rallied. I really wanted to recover, I wanted to do my leaving cert and get out and live my life. So I did. I checked myself out of hospital early before I was weight restored, and charged through a last minute one month marathon of study, and came out with 575 points and a place at Trinity College.
I loved university, and met some of my best friends there. But I hadn’t dealt with any of my past issues, especially when it came to trusting new friendships. I really had been hurt very badly before, and didn’t realise the brick wall I immediately threw up against anyone I was about to get close to. I couldn’t trust that any happiness would last, or that I deserved anyone’s interest. I soon developed severe exercise addiction, running myself into the ground for months; I couldn’t function without coffee, and went through extreme restrictive diets to the point where I was only eating fruit for months. I hadn’t had my period for years at that time, and suffered chronic insomnia. I was right back at my worst physical state – yet no one could touch me now, I wasn’t a kid anymore, I was determined that no one was going to force me back into hospital or take my coping mechanisms away from me again. This continued for months.
Then, going into 3rd year at college, my world completely crashed apart around me, and I quite literally lost all control over my health. Firstly, I took an awful fall while out running, and almost broke my hip. I had to stop exercising completely, which was psychologically crippling. Then, my digestive system shut down, and I developed gastroparesis. I was sent to ER because of my weight and bad vital signs every time I went to the college GP. On one occasion I told one of the doctors at Trinity that I didn’t think I wanted to continue living if things were to stay the same, if someone couldn’t help. She told me not to say things like that, or I would “end up back in that hospital.”
I then took off to New York for a semester abroad to study at Columbia. It was not a fun experience. I spent the year lying on my back in bed with chronic stomach pain, or getting tests done at the gastroenterologist’s. I have to say though, once the college realised what was going on, I was given tremendous support, which really helped. Unfortunately, I cannot say the same for Trinity. In fourth year, I had hip surgery to help my injury, which turned out to be torn cartilage, which they couldn’t repair. Nonetheless, after 18 months off exercise and running, I slowly started rehabilitating myself back into my regime.
Returning to New York in 2017, another major relapse started. I switched from sprinting to endurance running, and soon realised that the lighter I was, the better and faster a runner I would become. So I took extreme measures to make this happen. Coffee, diet sodas, tiny portions of food, etc. For months. I started hitting extreme highs during my runs, which quickly escalated to over 40 miles per week. I could tell that I was going downhill, and panicked. I was seriously very passionate about the running, and all I wanted was to be a healthy, glowing example of how you can thrive on a vegan diet, and inspire others with my passion for the sport. So I signed up for the half marathon and told myself that I needed to choose. I couldn’t keep destroying myself while exclaiming to the world that I was striving to improve and succeed in all aspects of my life.
I started to get messages flooding in about the obvious weight loss – I had become pretty emaciated. I was conscious of this on a daily basis, and it only further knocked my confidence. I realised wasn’t confident in my own skin at all, but was terrified of gaining weight. So I decided that I needed to start listening to how I was talking to myself, how I saw myself in relation to the world around me, to pay attention to reality, to slow the heck down and stop living life at 100 stressful miles an hour – and do away with negative behaviours and responses which had become automatic, and had existed for years without me even realising.
I can look back at past events in my life now and rationalize about what made me turn to an eating disorder and exercise in the first place, for some sense of control, or coping mechanism, or way to disappear, punish myself, or just express inner pain and sadness. Paying attention to my needs, trying to be kinder to myself – and accept that relapse is okay. It’s not a question of, oh, if you do this one thing, then you’re recovered and 100% ok. It’s more like, right, you’re committed to this, it’s ok if it’s not perfect straight away, things don’t have to change overnight, it’s all a process. And yes, you can talk about it, and no, it’s not a shameful topic.
I am also very slowly finding peace with and strength through exercise, because at the end of the day I absolutely love running, and I’m good at it. I’m committed. And I want to share my enthusiasm. But this is another major issue: our society’s relationship with exercise and our bodies. One thing I am 100% sure of, is that my body image issues (while only figuring as a small part of the problem) stemmed from the negative dialogue and publicity surrounding women in sport and physical appearance. As a runner, my body is going to look a certain way, and it’s not right that we should have to go through so much “to accept that” or for this to be even part of the conversation. Enough. Working out is not a form of punishment, or way of compensating. This issue, however, needs a whole other post entirely.
Now when I meet with relapse, there is one major difference in my attitude and outlook. I refuse to let it take over my personality anymore. It will not prevent me from living my best life, from showing up, from bringing my best self to the room every day. It won’t stop me from raising my voice, or dictating how I perceive the world. Because the negatives are all just lies. They’re just made up, it’s not me at all. I am worth it. I’m not going anywhere.
I am a happy, confident, passionate, hard working person. I’m not second best – I never was. Neither are you. But it’s true. You can’t expect anyone to love you until you love yourself first. My motivations for recovery are many, the main one being that I don’t have any reason to need that false crutch anymore. I am creating the life I choose to live.
Also, while not everyone will suffer from an eating disorder, I truly believe that we all share many common struggles and difficulties which drive people to turn to them as coping mechanisms, and that we need to be able to speak about this amongst ourselves more often. It may just make everything appear a little less daunting at least. That’s what I’ll be aiming to do to do with my blog and posts going forward – create possibilities for points of connection, find strength through vulnerabilities, and confidence through belief in ourselves and our passions, as well as through our shared flaws and insecurities.
So Let’s Get Real. Because awareness isn’t the only thing we need here.
“I want to be able to stand, strongly salute and say, I am a solider, suffering, done with secrets, and done with silence.“
If you need help or know someone who does, please consider all the resources, contacts and information available on the Neda website: https://www.nationaleatingdisorders.org/get-involved/nedawareness