A memory sprung to mind the other day thinking back to when I was first involved in eating disorder services. I was given a questionnaire to fill out and one of the questions on it was, “Does your eating disorder make you feel you can have your cake and eat it too?” And I just think now how inappropriate and insensitive that question was. There was surely a better way to word it, it almost seems as though someone was having a joke at patients expense.
TRIGGER WARNING: mentions numbers
Okay so I wasn’t going to write about this for the sheer fact that the unit is still open and my experience doesn’t mean everyone’s will be like mine. For these reasons the unit will not be named.
I went to the secure unit in May 2016 because my personality disorder made my self harming behaviours too dangerous to remain on the acute ward or to go to the retreat like we had planned. It was a nightmare. My memories of it are blurred due to the effects of starvation and the lifestyle I had to lead there.
I had begun restricting my eating just before I left for the unit and it continued unnoticed whilst I was there. Then in June 2016 I stopped eating completely and as a result my family visits were stopped. I felt punished and still feel this was unfair and my parents had to fight to be able to visit me. My dad turned up for his Father’s Day visit only to be sent away which was heartbreaking for the both of us.
They began monitoring my weight and bloods and these slowly decreased. In September I was admitted to a general hospital for refeeding through an NG tube and I then returned to the unit where I continued to lose weight and was admitted again for refeeding via NG tube in November.
I hit my worst point in December. It was my mum’s birthday and I walked into the visiting room singing ‘happy birthday’ and mum just burst into tears at the sight of me. A week or so later my ECG showed problems with my heart and potassium levels and I was admitted to a general hospital again for refeeding and heart monitoring and I was put on a potassium drip. I returned to the unit. A couple of days later I was called into the quiet room in the evening. I was told I’d be seeing an eating disorder specialist at 8am the next day.
I was woken up at the crack of dawn and assisted to the shower. I was so weak and hasn’t showered in weeks, I had to sit on a chair whilst the staff member washed me. I then was assisted to the visiting room to see the eating disorder team from my local health board. They felt it necessary that I come into the general hospital I am in now as a matter of emergency. They weren’t sure I was going to survive at a weight of just 32kg. I had no phone or iPad at this point and the thought of taking a picture of myself didn’t even enter my very poorly and starved brain so to the haters, no I don’t have any proof of how poorly I got physically just the memories that are left with me of that time. The times when I couldn’t walk to the toilet on my own or straighten my legs and my body hurt so much.
It wasn’t just the starvation side of things that made the unit I was in a total nightmare, a lot of things happened. I never went outside, the whole 8 months I was there the only times I went out of the tiny ward were to go to hospital. I wasn’t allowed anything in my room, not even cards people sent me, I wasn’t allowed a pen or cutlery or access to the Internet or my phone or iPad or computer. At one point I wasn’t even allowed my clothes and I wore anti rip smocks for months. One time early on in my admission when I was still having periods I wasn’t allowed a sanitary towel and I literally had blood running down the insides of my legs.
We were often locked out of our bedrooms leaving us with a little room with a tv to spend our entire day in with very few activities going on. We were never allowed in the toilet alone and were given toilet tissue one square at a time.
I had to move rooms during my admission after another patient tried to strangle me and I have to admit I didn’t resist. I hoped she would kill me.
The first night in this general hospital when I had brought all my belongings from the unit knowing I would not be returning I was distraught. I phoned mum and sobbed on the phone to her telling her I felt like I was in a living nightmare.
I was so poorly I couldn’t do anything so there are no posts or photos from these times just my word which seems to be questioned often and that does upset me. So please think before you comment to or about me that actually you don’t know the full story. This is the last time I respond to hate.
This week my psychologist and I spoke about if I were to get well and what it would look like and my fears around it and to be totally honest I can’t remember what it’s like to be well. It has been over a decade of illness and nearly two years since I came into hospital after a handful of shorter admissions.
If I really try to imagine it I imagine a ‘well’ life to be quite good. I wouldn’t be in hospital and I’d be at home again with my family and my dog. I’d bake and cook meals and snacks for myself, I have hoards of recipes saved for when I get better and I can’t wait to try them out. I would enjoy eating, an idea that seems incredibly alien to me right now. I would go to ballet and help out with the younger classes. I would go to the beach with my friends and laugh the night away at karaoke. I’d watch telly with my family and go to the cinema with my dad. I’d play on the 2p machines at Barry Island with my mum. I would have my freedom back and I could go on walks alone, just my iPad and me. I’d experience new things, new foods, new places. I would live instead of exist. I would be able to be an adult although that absolutely terrifies me.
Everything about getting well is full of uncertainty and it completely overwhelms me. I’m scared to eat again, it’s been nearly a year since food passed my lips and it terrifies me to think of the day I have to put it in my mouth again. I don’t even know how my stomach would physically handle solid food after so long. I’m scared of the taste and texture and ‘greasy’ feeling food gives me. I’m scared to gain weight, to be fatter than I am now. I’m scared that none of my clothes would fit me. I’m scared that being bigger would make me hate myself even more than I already do. I’m scared of the responsibilities that come with life, I’ve got a lot to learn, and I’m scared of the day another of my loved ones dies, it feels unbearable to think about my mother and father dying. I don’t even think I could handle my dog dying. I need to reintegrate back into society and that scares me, even the thought of standing in a supermarket aisle terrifies me at the moment because I am so used to these four walls. I also worry that I wouldn’t have anything to blog about. My whole social media outlet is centered by mental illness and if I were to get well then where would that leave me? I’m not sure that I know who I am without all of this and the thought of being an adult terrifies me. I might be in my twenties but I don’t feel ready for that yet. What would I do for a career, I mean I don’t even have A levels, would I have to go back and study? A recovered future is full of questions. If I were to get well then I wouldn’t have a mental health team around me, these people I have known for years will not be in my life anymore and that really scares me.
I want a normal life, a recovered life but I’m not sure that it’s possible and that makes me feel a bit torn when it comes to recovery. Part of me wants to really give it a shot but the other part wants to give up and die and I can’t say which side is winning at the moment although it is probably the latter.
“I feel fat” is something that runs through my mind and leaves my mouth thousands of times a day but what does it mean? Fat is not a feeling and factually I am underweight. I’m trying to explore what is really going on when I feel fat. I mean I can ‘feel’ it, I get the physical sensation of fat growing on me, I can feel my skin tingling, itching and bubbling. I can pinch my fat but I’m told it’s just skin and I can see I’m fat in the mirror and in photographs but emotionally it is not possible to feel fat. Maybe I feel sad, anxious, afraid or even angry but my brain smothers the emotion and turns it into the feeling of fat. The world of eating disorders is a very confusing place. I don’t know what’s real and what’s not or who or what to believe. I can look in the mirror and see my sickness on rare occasions but just hours later I can see the flabby me reflected in the mirror again. It’s like living in a funhouse where all the mirrors are stretched and exaggerated. I don’t know the truth of what I look like and that can be very scary.
A couple of years ago I made a short video with Fixers about what it’s like to be sectioned for an eating disorder. This came about after I saw a comment online saying, “I wish I could be sectioned so that I could have a hug” I was utterly shocked by this. Being sectioned is not something I have ever wanted to happen to me and hugs are very rare when you are in hospital. After reading the shocking comment, I made ‘sectioned’ which can be watched here.
My life has changed a lot since then, a lot has happened and when I watch the video now I wish I could update it so I thought I’d do it in a blog post. In the video I had only experienced being sectioned under section 2 of the mental health act. I have now been detained under section 3 of the mental health act since 2015 and this is still on going.
In the video I talk briefly about the two weeks I spent on level 3 which is where a member of staff remains with you at all times, this includes in the shower/bath, on the toilet and whilst sleeping. I have now been on level 4 2:1 for 2 months and this is also ongoing. This means two members of staff are within arms length of me at all times. So now it’s not one pair of eyes on me while I sleep, go to the toilet, shower etc but two pairs of eyes on me. I haven’t gone to the toilet unsupervised since May 2016.
My ‘choice’ remains the same. I have to drink sickly, gloopy supplements or they go down the tube I have up my nose. The difference is that now I can’t bare to let it touch my lips and so everything goes down the NG tube. I say ‘choice’ because I don’t really get a choice, I have to have the supplement drink one way or another. Some days I am restrained whilst they pump the feed down my tube.
I still feel my skin crawling with calories, itching, bubbling. Maybe this sensation will always remain with me around food, maybe it will never go away and that scares me.
In the video, I say “The final section, I hope it was” and I am gutted to say it wasn’t, I have a few more to add to this list. I wish my update was that I was living a normal life and the facts of the video had not changed. I wish I could say I was well rather than wishing I could remake the video to fit with my current circumstances.
My message remains the same: Mental illnesses are not fashion accessories, eating disorders are not glamorous and being detained under the mental health act is not something to strive for. This is still my life and I would not wish it upon anyone.
Today is Sock It To Eating Disorders Day so put on your silliest socks and post a #SockItSelfie to help raise awareness of eating disorders. You can also donate to the eating disorder charity B-eat here
I have not always had supportive friends and family when it comes to my eating disorder. In fact there were years of pain where people didn’t understand or walked out of my life and I have never felt so lonely and isolated.
Nowadays I am extremely lucky to have the support I do. My parents visit the hospital everyday, my sister visits everytime she has a Saturday off work and I have several friends who visit often too. On top of this is the incredible online support, my twitter followers who send well wishes and the comments on my instagram that keep me going. I no longer feel alone in my battle and whilst hospital can be an isolating experience, I feel much less isolated than I used to.
I have lost many friends because of my illness, people who simply couldn’t cope backed out of my life and it really hurt. For years I kept my illness from my extended family and wouldn’t talk about it to my immediate family. This caused tension, loneliness, arguments, upset and total utter misery. Now I am much more open and I am both lucky and truly grateful for the support I receive from the people in my life.
Friends play a key role for sufferers of eating disorders, they are often the only part of ‘normality’ left in a sufferers life. Right now I am very unwell but I love nothing more than to have a gossip and a giggle with my friends. I don’t always want to talk about anorexia, sometimes it’s nice to take silly photos on Snapchat and to make plans for the future.
The role of the family is vital, particularly if they are the people the sufferer is living with. I know it is not easy for my family to deal with my eating disorder. I am well aware that they are heartbroken by how poorly I am at the moment and that before I came into hospital I was hard to live with. I was often in a bad mood with a short temper, particularly around meal times. I would eat separately to them most of the time and if they were in the kitchen when I was food prepping I would be very stressed out. They had to deal with a lot, especially coming home to empty cupboards during periods of binge eating. But I needed them. I needed them so much. Their love and support meant the world to me and without them I probably wouldn’t still be alive. We used to not talk about anorexia but now we are so very open with each other and it has brought us closer together. I have an incredible relationship with my family and I feel both lucky and thankful for this everyday. My friends and family both play an incredibly vital role in my life and my recovery.
“You’re looking well”, those words that are said and meant with good intentions but spiral an eating disorder sufferer into a world of terror, confusion and fear. I hate people telling me I look well because I hear the word ‘fat’ when you say ‘well’. I’ll be left thinking ‘oh my gosh my cheeks are chubby, my thighs are thick and my stomach is prominent’ and my body image will be thrown out of the window for at least a week but I think I hate these words more because when they are said to me, I am not well. The battle on the outside doesn’t always show the battle on the inside when it comes to eating disorders.
I may have managed to spoon cereal into my mouth at breakfast, I may have ordered a frappucino in Starbucks and I may be a healthy BMI but that doesn’t mean my eating disorder has gone or lessened in intensity. In fact some of the times when I have been a healthy weight have been my worst times mentally. A sick person doesn’t want to hear that they are looking well.
I hope that one day I am able to hear the words, “you’re looking well.” And respond with “thank you, yes I am” and to truly mean it. To feel good about having this said to me but for now it is something I dread to hear and I know I’m not the only eating disorder sufferer that experiences this.
This Eating Disorders Awareness Week you may want to check out the following videos:
Firstly there is a talk about anorexia nervosa. It was performed at Ignite Cardiff and is titled ‘pro ana?! Pro life!’ It is about the realities of living with an eating disorder compared to the idealised views of the pro-anorexia community. It is also about overcoming eating disorders and sends the message out that ‘life can change in a minute.’ You can watch the talk here
Next we have a video about being sectioned for an eating disorder. It was created with Fixers, a U.K. charity and was brought about after seeing a comment on social media saying, “I want to be sectioned so that I can have a hug whenever I’m sad.” You can watch the video here
Finally we have a TV programme called ‘The Feel Happy Fix’ which was recorded live from the ITV studios by Fixers UK. It’s a programme that focuses on young people’s mental health in general but many of the young panelists have personal experience of an eating disorder. You can watch it here
I spoke at Ignite in the Glee Club in Cardiff in 2015. My talk was about anorexia and challenging the ideals the pro-ana community puts on anorexia with the dark reality of anorexia. At the time of the talk I was in a good place. My diet was still very restrictive, I was not a healthy weight and I still struggled but I was living my life too. I was on a high. I went out and experienced life, I went on TV and radio, I began writing for The Huffington Post. The talk got a great reception and I received Ignite’s first ever standing ovation. You can watch the talk here. I feel very differently now to how I did in the video so I thought I would do an update.
In my speech, I talk about how fatal anorexia can be and I can honestly hold my hands up and say that anorexia nearly killed me in December 2016. There was a point when I didn’t know if I would even reach Christmas Day. My bloods were all over the place, my heart was a mess and my weight was dangerously low.
In the video I say, “I didn’t sleep, I was addicted to laxatives and exercise” and ‘was’ was so important because I had overcome that but now I find myself asking for movicol and senna all the time and I take as many laxatives as the hospital allows me to and I know full well that if I was at home I would take more. My laxative addiction is back. It’s hard to exercise in hospital, I’m not really allowed to and I use a wheelchair to go everywhere but I find myself walking to the bin, or my stuff, or the sink as much as possible in order to burn a few calories. Burning off calories is always at the front of my mind.
I also say, “I wanted to die” and I wish I could fill you up with positivity and still be able to say that but now I would have to say, “I want to die” because I do. I’m in such a mess with anorexia and every single second of the day I wish I could press the stop button. I have received and am still receiving life saving care but I wish they would just let me die and escape this nightmare for good.
I was able to say, “I have anorexia, anorexia doesn’t have me” but this is now the other way around. Anorexia has me fully in it’s grips and I don’t know who the hell I am or even where to find me. “I am not worthless, I am Claire and life is what I make it” are words I can not say anymore,I feel incredibly worthless, like I’m a waste of resources. I don’t feel like Claire, I am not the same person now that I was in that video. I find it hard to believe that life is what I make it, my life feels incredibly out of control.
The comments in regards to pro-ana remain the same, my weight will never be low enough for me to be content and I cannot see how ill I am told I am. I do not feel thin but I’m told I’m dangerously underweight.
My message remains the same, anorexia is not something to strive for, mental illnesses are not fashion accessories and I am waiting on that minute that is going to change my life again.