Turning Pages Was Seen As Exercise

My name is Sarah, I’m 32 years old and I have been battling a very chronic eating disorder since I was 12, but it was only when I was 16 I went looking for help. There have been several things that impacted me to end up living with this horrible disease. I was a very quiet sensitive child and at 11 started falling sick after months of trying to find answers to what was wrong. I ended up having an underactive thyroid. I remember so clearly that I went to a very well-known consultant In cork which was my first experience being weighed.

 I remember it was an old-fashioned big scale and the nurse brought me out to it in the busy waiting room. When I stepped on a scale little did I know the impact? I remember my outfit, what shoes I even wore. The nurse brought me back into the consultant where dad and mom were sitting, the nurse handed me a piece of paper with my weight on it, quickly he snapped that can’t right go weigh that child again!! This time I felt totally different tears in my eyes and hoping the number would be different. I felt I did something wrong. I was weighed a second time & went back terrified. The Doctor looked at me and said well Mr and Mrs **** this girl will always have to watch her weight with or without any thyroid issue. He went on show the BMI scale and questioning my parent’s food choices. I don’t think he talked to me directly at all and I couldn’t get out of there quick enough with leaflets on obesity in kids, thyroid medication, and recommendations that I go on diet. 

From that day, I’ve been restricting and punishing my body. Slowly I started cutting out things like chocolate (“bad food”) and anything nice that was given for my lunch. I didn’t feel I deserve them so I would give them to my best friend at lunch. Suddenly I found a love for exercise I did it all the time. It took me a few years until the weight loss became visible, I was getting so many compliments and finally, I felt I found “my thing” that I was good at.

At 16 my older sister confronted me and made me tell mom and dad. Still, I did not really think anything was wrong, I was doing what the doctors asks and sure every teenager was on some diet. My first port of call with seeking help was going to a Family Doctor, she was totally dismissive saying physically I only had 3 out 5 symptoms. Part of me was delighted I would get my parents off my back and another part feeling like I needed to be even more determined to prove I was good at this and “get sick enough”. I wished the Doctor would have prescribed a pill and tell me I could go back to normal child life. But that never happened.

At 18 it all came to a head, with me collapsing at school and my best friend outing me, at this stage, I was doing 4 hours of exercise, taking diet pills, laxatives, and eating fruit. This time I didn’t sugar-coat anything. 

I went to a different GP and I was told that the public services had a very long waiting list and it would be best to go private. I saw a few private Dieticians that would put me on a very basic meal plan and tell me that that was their way of saying you can eat just watch what you eat! So I would eat but have diet products and a very limited diet. I convinced myself I had every intolerance going and was aloud a ‘treat’ just once a week when I earned it. I also saw a few private therapists but there were very few that specialised at the time. All of this was happening with stuff going on at home and my eating disorder was able to help put all focus on me. Not addressing other stuff.

At 19, I found a wonderful therapist, and I’m still seeing her to this day. She was the only person to give me hope that recovery was possible. I had to travel an hour to see her and it was expensive but it kept me safe, while I was waiting on a chance to be seen by the public services in the day hospital as my eating disorder was very advanced and I would be seen by many different psychiatrists as none stayed very long.

I was started on cocktails of medicine and each consultant would add something new. I became like a zombie and the only constant treatment plan was being weighed twice weekly. I then began purging. I started getting very unwell and the only option they could see was admission to a psychiatric unit in Limerick, against my will. I would have 4 admissions there.

Their treatment was all reward and punishment-based. They took everything from me bar a few pairs of pajamas, I had no phone or tv or books. I wasn’t allowed to see any visitors for months on end. I was on one to one special care where the nurses could not speak to me, I was bed-bound and at the beginning and could not even read as turning pages was seen as exercise and could only turn in my bed four or five times when the nurse said, again felt this was burning calories I soon developed infected pressure sores all down my back. I was put in a wheelchair and the nurse would watch me go to the toilet and shower me.

This was also when I was first tube fed. It wasn’t even discussed with me, my parents agreed but they didn’t know what else to do as they were being advised by professionals. 

I was held down by a nurse while a doctor forced the tube back my noise back my throat into my stomach! I’ll never forget the choking feeling and to me, I was being punished! This process I would get very used to with needing tube feeding numerous other times to the point I now would be able to insert a tube myself without X-ray or Drs and dislodge it. I learned all the tricks. I hated every second of the tube being in and would cause me such distress that even if I wanted to eat I couldn’t now!!!

If I put on weight then I could have an hour of tv or supervised time out of my room but I hated this because there was a real mix of very sick people and I was the youngest by far. There would be two types of groups the ones that were like zombies walking around the corridor up and down, eyes on the floor, or ones that would be screaming and having arguments often makes running around naked or fighting with other patients. After a while, I’d go out for few hour’s leave but I ended up becoming more anxious about that and have panic attacks when I did get out. My parents would wheel me about and would force to feed me and learn how my tube-fed worked.

My parents hated me being in there but we had no private health insurance and they could only see me deteriorating. I wasn’t their daughter anymore. They rang politicians pushed for specialist care and we fought for HSE funding it was a very long process and the first time I was denied it took me to have a cardiac arrest for the HSE to take me seriously and offer me funding. At 21 I was admitted to another hospital in Dublin.

It was a 12-week program and because I was so medically unstable I ended up getting a toxic sin that could have killed me because my body wasn’t used to all the food. It was weeks before I could join any of the therapy groups. The majority of my time was sitting down at tables with a mix of other eating disorder patients and eating up to min of 3000 kcal we would be watched and no one could leave the table until everything served was ate.

There would be girls in fits of tears and then we would have to sit altogether in a living room for an hour after each meal before we could use toilets to go to the bedrooms. 

We were weighed twice a week and depending on if u gained your requirement that week you again got privileges. After 12 weeks my funding was up and you are then discharged and I was left with no aftercare, as you can imagine id been in a place where you have no responsibilities, and then suddenly you’re home with no support and trying to get back in a new way of life.

I found it impossible to live with others my age and nearly always relapsed when I did. There is was no communication between my team in Dublin to my Limerick team and by that stage, there was a new psychiatrist with little to no experience with eating disorders.

Mostly they would give you medication to increase your appetite because they thought that would be the answer during this time I was then having mini binges and my purging behaviour got ten times worse. I felt totally out of control and a failure because I was no longer in control to restrict I felt hungry all the time. To this day I still cannot trust my hunger signals.

If I’m honest I came home with even more bad behaviours I was more ridged than ever I was obsessed with my weight more than ever. I never owned a weighing scale until I went into treatment. It was advised to check your weight weekly but that’s like telling a child not to have sweets. I was weighing myself up to 10 times a day obsessed I bought the most expensive one that could give u all the data because now I was determined to stay healthy and within this healthy BMI range. Which was still v low weight.

I took some time away from services and went back to do my degree and within that time I was probably at my best but damage was already done. The eating disorder had caused such stress and strain on the family, I hated the monster I had become trying to control and have everything perfect and my way.

Iv lost so many relationships and my physical health started to take a real hit now I was admitted on the medical side for weeks on end and I couldn’t see my therapist I became extremely unwell, but all I wanted was to be healthy I started marathon running as my bones became osteoporotic I have been told u have the same bind if 80-year-old. I have broken my hip n pelvis and ribs but I continue to push and punish myself this was my thing. I could run from the Ed and from all the rules everyone had on me, it was a vicious cycle.

I would then need to be admitted to psychiatric ward 5b again as that was all on offer, each stay I got worse and I reached my lowest weight of 4 stone 7lbs. I stopped talking as I felt my voice did not matter and I pushed my family and all my close friends away I was just waiting to die. 

Some of the remarks of so-called professionals were just scandalous. One consultant told me to go to afraid and see the starving children then I would cop on. This was the treatment or advice I was getting not CBT or anything else, I was told I would be the reason for my mother to jump into the River Shannon, or just eat that’s all you need to do it’s the most basic thing you learn I should be able to do that!!

At one stage I went 19 weeks before I got to be wheeled outside in fresh air. Again we fought for funding but a two-week admission ended up being 8 months. At this time my kidneys stop functioning so I now need self catharsis as all my teeth fell out, at 25 I had dentures, my liver heart n spleen all started to shut down and to this day I take 32 different medications and have to inject myself twice daily. All of these are irreversible. I felt I had to get this sick to be taken seriously and receive the funding. Dad would hold my hand in the hospital bed checking my pulse terrified I wouldn’t wake up. I got to the stage where I started hoarding my medication to end my life. No one notices bar one caring nurse who actually treated me like a human being. She’d sneak me outside, brought in the latest magazine, and would get me any food I wanted if it meant I ate. 

For once I was Sarah ***** not just Sarah with the eating disorder, she saw me and that meant the world and I began wanting to get better but knew I needed specialist care just in time I received funding for the second time but was told this would be my final opportunity. 

I remember going into another facility full of hope. While I did do better there I was extremely homesick and found being around sick people so hard. I would take on their worries and stresses and spent more time focusing on them. I regained the weight much quicker there because I was sick of hospitals and wanted to be back to normal life. But again treatment was eating at the specific times with specific amounts and then you get stuck only feeling safe having these foods. In this new facility, we would have to sit in a room with a specialist nurse and talk about our experiences with our meals the nurses would have a notebook with all the negatives they could pick out what you did wrong, net pick at smallest things, this was so hard for many of us as we would feel even guiltier because of our perfectionist nature. Finishing a meal may seem like nothing to others but for us, these were huge achievements and sometimes you just want to hear well done. To be honest it was the people I met in there that get you through some really hard days. The thing about being inpatient stay you realise the doors become revolving for many as they had health insurance but again my funding ran out and I was discharged I was at my healthiest physically but mentally I still had work to do. But I was determined to stay well and do my best.

I came home and requested a team meeting my second one in 8 years and it was helpful because I see my therapist private n my Dietician isn’t part of the day hospital, we discussed what we felt would help and everyone had their say and we were all on the same page. I waited a year until cbte is which is specific to eating disorders became available I would be seeing a specialist nurse that I had met years ago in the psychiatric hospital and I would attend twice weekly, we would do work and be weighed and she was v supportive I also kept seeing my therapist twice a month. I was seeing light again. I was back working happy and my soul purpose was no longer being sick Sarah. 

My nieces came along and I vowed they would never know me as auntie Sarah with eating issues, I wanted to be bringing them for ice creams and running around and be present. For a period I felt I was doing really well I was slowly beating the eating disorder voice although I always had at least one behaviour going. Mainly over-exercising. I went from purging 20 times a day, scared of toothpaste to having meals out and feeling well, I really put this down to the combination of nurse support and my therapist and just wanting my life back.

But Covid hit and suddenly everything stopped I received noting barb 10 min weekly call-to check-in. Worked stopped and I moved home left with just my eating disorder. This was the longest I’ve gone without input or being weighed although the day hospital wanted me to self-weight I refused because I knew I would become obsessed. I had all this spare time to think and it felt like I was being stuck in the psych ward again with all the rules and my choices gone. Being at home is also v hard as issues are still there not dealt with and there is a lot of resentment.

 I suddenly became very unwell and was rushed to cork hospital As I was diagnosed with chronic pancreatitis and blood clots. The doctors said it was from years of malnutrition and the treatment for this is to stop eating! Yes, I cannot eat, very problematic and head confusing for someone with a past like mine. I would have gone weeks without eating only drinking water and nutritional drinks that I once was totally dependent on and soon I was scared to eat again. All my old thoughts reappeared. 

Cysts began to develop and I had many procedures to remove the cysts but they keep refilling up. I spent last Christmas Day on my own because of Covid in hospital and not able to have Christmas dinner the irony. I spent three months in Dublin with a pancreatitis specialist who did not understand my history and said I will now need tube feeding if I get v bad fleur ups. He was a horrible doctor who could not see how this was so distressing for me. 

I lay in bed watching drip by drip this liquid go into me and slowly my eating disorder voice was very active and loud again. He told me if I didn’t go on a silly diet this could have been prevented. Suddenly I was blaming and punishing myself when I was discharged, I wasn’t honest about how bad things were and when I spoke to my team they dismissed it as it’s a medical issue, not a psychiatric problem and honestly I don’t know if my family or me even knew what was my pancreatitis and what was my Ed talking. Now if I get a bad flare up I can’t keep anything down and have very bad bowl issues it was like flashbacks of my past. I begged my new psychiatrist for more support and the support she thought was needed was to come in and be weighed regularly it was ridiculous because I was v sick and sometimes my weight would jump up from inflammation and others be down from being physically not able to eat. I am currently back being scared to eat, partly because I’m afraid of fleur up but more so because my Ed is back very loud in my head and all my old behaviours and thoughts are there. My nurse went on leave and no one is replacing her so my cbte was just stopped, but they still weigh me once a month but with no nursing support, my last 3months I’ve been weighed by different nurses who have no idea of my history. I have asked for more support but have been told they have no more eggs left in their baskets & that I’ve gotten all the help I should be able to take responsibility now !!! I get 2hrs max sleep, I’m constantly anxious I’m getting v hopeless and in constant pain, in and out of the medical side of the hospital I only just home two days and for half my time they did not have my psychiatric mediation.

I’m currently not near my lowest weight although I am slender but that’s shouldn’t matter it’s my head and my thinking. I can see it in my face and my clothes I don’t need to step on the scale to know that and they do not seem to be concerned as they’re comparing me to what I was years ago. 

I have been told I have a long chronic enduring eating disorder and they do not believe I can fully recover. I’ve always had hope because I see friends beat this horrific disease but in the last few months, my hope is gone. I feel I have no energy left physically and mentally and a lot of my old core beliefs were never fully dealt with. I see my therapist once a month and she is the only person that believes in me, she said I should have died years ago and I didn’t I’m still here trying to battle through & I could help many others. Ultimately that would be my dream. We are more like friends now, she’s been my one constant but I know she feels lost about what to do and has even suggested cutting back more on therapy which terrifies me.

 I’ve become a functioning eating disorder person and it’s like everyone around me has just accepted this is my life. I don’t even feel I’m surviving I’m barely existing. Finically I can’t just go privately to see specialists I need. I’m so angry that there are only three public beds in the entire of Ireland and you need to be in that catchment area to get those beds. There is no communication between any of my team and I’m struggling to even have a team meeting together with them.

It is only through social media I found a great community and I have found a center that is willing to take me but it’s v expensive and my only option is to apply for HSE funding for the third time. It’s very unlikely I would get it again as I had my opportunities. The guilt and blame I feel are awful! I wish I could turn back time. Eating disorders never make you happy, it has robbed me of so much of my life, possible future kids, family, job opportunities not to mention the irreversible health damage.

I really don’t know what I’m fighting for anymore because I feel like my team has given up on me. I go to bed crying most nights wishing I won’t wake up because I cannot take this existence it is torturous.

I feel like a failure and such disappointment to everyone that believes in me but I am also so angry with the Irish health system. It’s failing many of us especially if we do not have the money. Right now I would do anything to have the opportunity to get the chance for any support because um getting nothing atm. I’m terrified by the time I even try for funding it might be too late as it takes months to come through if I even would be approved.

Sometimes I feel my life is in other people’s hands who don’t understand about mental health. I feel so alone. I try every day, but because I’ve been living with my eating disorder for so long I believe I need very intensive treatment now. What I’m getting isn’t working and it hasn’t worked for 20.

Treatment in Ireland needs to be changed it can’t all be in Dublin-based, there needs to be a holistic view not just a weight focus point and this punishment and reward system definitely is not the answer. We punish ourselves enough for that. Someone said it’s like cancer in the brain and I Couldn’t describe it better, we need compassion and empathy and support, not shame and guilt. Cancer patients would not be turned away from treatment if it didn’t work the first time yet my basic right to live a boring simple life is. I take responsibility for my part but it’s hard enough to fight the eating disorder without having to fight the system too!

I lose hope and fight as the days go on. I just hope change happens if not for me for any others coming up through the system now. This is a very treatable illness, and for many, if it’s caught early and treated correctly it can lead to a happy and fulfilled life.

This is the first time I’ve sat down and really written my story down in full. Hopefully, my story can help other people.

By Sarah 

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