Stories

My D20, has had OCD since the age of 9.

We returned to Ireland from Australia at the age of 12 with a diagnosis of OCD? Anorexia.

OCD was with over exercise. 

OCD had disappeared at age 14/15.

Anorexia set in in 2019 just turning 16 years old. We went to Australia and stayed for four months. She ended up Hospitalised in a Specialist Eating Disorder bed in Australia, every hospital has dedicated eating disorder beds, we returned to Ireland straight after hospital, just before COVID hit. Of course that made treatment difficult.

The Social Worker in the local CAHMS did some counselling over WebEx.

A very kind neighbour facilitated my return to work as my D16, would not eat unsupported for a full year. She continued with CAHMS and the Social Worker. There was no other support available.

Privately we managed to find a lady who supported people through eating disorders, having had one herself. She was wonderful. 

D17, tried a hospital admission privately and discharged herself as the others were “pushing peas around the plate”, which was difficult for her. She threw her Ensures down the sink as they were given unsupervised.

As soon as she turned 18, the local psychiatrist stated Anorexia was not her forte could we find somewhere else privately if possible. 

She went to an institution for 12 weeks privately relatively well and came out with a habit of a lifetime weighing and measuring food!! No weight gain was achieved.

She tried it a year later as you are only covered for 12 weeks per annum, she was quite unwell at that stage and we wanted her exercise reduced, it was confronting at that time as it was not well managed, she left after 6 weeks, no weight gain yet again. 

There were no psychiatrists available to take on  her care although we tried everywhere. The GP was fed up of writing referrals. 

She moved to Dublin to Uni and was referred to SVH Eating Disorder Unit. She was attending an eating disorder Dietician who asked her to attend SVH Emergency Department.

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D19 was upset and begging them in the Emergency Department to admit her as she could no longer sustain the amount of exercise but couldn’t stop and was exhausted. 

They said no to an admission and would send an urgent appointment. 

They rang her and said “what do you want from us?? You have already had treatment and discharged yourself!!” My D19 was in tears. 

One year later she got  offered an appointment, in SVH eating disorder unit. 

By that time she had dropped out of Uni and relocated to Australia to access services there. 

In Australia, there is a clear pathway.

You go on a Mental healthcare plan and have access to 10 sessions with a psychologist and 10 sessions with a dietitian. This then gets reviewed and you get another 10 sessions and so on. The emphasis is to get on the recovery path quickly and keep people out of hospital. 

She has an exercise physiologist too.

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Although some of this is private you get a fair amount of rebate from Medicare, the healthcare system. Private healthcare has 2 months waitlist only for Mental healthcare and they don’t worry about it being pre-existing because they realise how important it is to get treatment as soon as possible. 

We have been here since July 2023, she has an amazing team consisting of a Dietician, psychologist and exercise physiologist specialised in Eating Diorders, and has had a private hospital admission within a month of arrival to Australia, she discharged herself after 4 weeks, having some weight restoration however not enough.  Her GP is very knowledgeable about eating disorders and knows the pathways to take. She has an appointment with a specialist psychiatrist in one month’s time. 

They have taken some of the stress away from me and are working away at her to recover.

I am an older parent, and on my own. I struggle financially to meet her healthcare and support needs as well as work when able. I have to work casually to assist her. 

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We feel lucky to be Australian Citizens. 

In our daughter’s case we feel that we were failed right from the outset, starting with our GP. We took her to the surgery on numerous occasions between 14 and 17, with Dizziness, blurred vision, low mood, self- harm, lack of appetite, palpitations, fainting etc. Eating disorders were never mentioned and she was never weighed.

It was not obvious to us as she had always been quite thin, but as she had gotten older, she was below weight for height and given the other warning signs referenced above, we feel that our GP should have picked this up through observing her. We feel this is down to a lack of knowledge and training on Eating disorders for GPs.

Had this been identified earlier, our daughter and our entire family may not have had to go through the horrific ordeal that we have had to endure for many years now.

Our daughter attended CAMHS outpatient services when she was 17. They did not have adequate services to manage her and she was referred to CAMHS inpatient services, where she spent 10 months. Our experience of CAMHS inpatient services was good overall, even though we feel Anorexia became more entrenched through being around others with the same illness.

Our daughter was discharged at 18 years of age. At this point she was still urgently in need of care but was discharged simply because she was an adult. We have also come to realise through our experience with this mental illness that years of malnourishment meant that her brain had not developed at the same level as a normal 18 year old.

On turning 18 she was given an appointment with a local AMHS team in our city. There were no services for her. The psychiatrist had no experience of Eating Disorders and she was told that she would need to wait at least 6 months before seeing a therapist. There was no dietician and because she was 18, she and her eating disorder voice were allowed to refuse our involvement in her care.

She was now completely in the control of her illness with no support especially from those who cared most of all. This was the perfect storm for things to get much worse.

Within a month she was not eating at all and had even refused to take water. We were advised to bring her to A&E, where she was admitted into the psychiatric ward. This was horrific for a young person to be subjected to. She was terrified. Nobody in the ward had any experience with eating disorders.

On a daily basis, HCAs, Nurses and Doctors would make comments, which were very
triggering for her illness and her condition worsened. This was not down to any bad mindedness from anybody. It is simply again, a lack of knowledge and training on eating disorders.

Our daughter spent 6 weeks there and was finally only transferred to St Patricks hospital because we fought to get her there and because we had private health insurance.
She spent 3 months in St Patricks hospital. Unfortunately, St Patricks do not offer the recommended treatment of NG tube feeding when a patient refuses to eat.

This option was something that our daughter urgently needed and availed of in CAMHS. While NG Tube feeding is not an ideal scenario, it does remove the associated guilt from the patient to allow them to work through a difficult period in their journey and is an important tool in helping them towards recovery.

As this option was not available, she continued to lose weight and deteriorated further. She attempted to end her life. She was transferred to St James hospital with heart pain from being so underweight. In St James hospital she refused all nutrition. The treating Doctor applied for ward of court, so that they could NG feed her. This process took almost 2 weeks to complete and was extremely traumatic
for us as parents.

Attending the High Court whilst watching your daughter literally dying in front of your eyes is a feeling we will never forget.

There have been many times that we have felt powerless during our daughter’s illness because her voice tells her that she does not deserve to get better. This was one time that the hospital and ourselves should have felt that we were in control.

She deteriorated so badly and was so weak that she could not even open her eyes. Eventually she was NG tube fed under restraint after being made a ward of court. She resisted and was mildly sedated.
She had people hold her down while screaming 4 times a day for 2 months. The physical and psychological damage from that period of time are still with her.

She is still not walking 2.5 years later and suffers from PTSD from feeding under restraint. Again, the staff of St James hospital are not to blame for this. We saw the pain in their eyes after each feed. Training is required to provide this type of care in the most humane way possible.

Finally, the Judge ordered that she be transferred to the UK because there were no beds available in Ireland. We had to wait for her to get strong enough to be transferred by air ambulance to the UK hospital.

She has been in the UK now for over 2 years. The last year of this time has been spent in an excellent facility that treats 18 to 25 year olds. This is so important because she is around people her age. The staff understand that she is still a young person and treat her in the same way as when she was in CAMHS.

We are involved in her care because it is recognized that parental involvement is crucial
with this illness. We are trying to help our daughter to fight against a voice and an illness that is trying to destroy her from the inside out. She needs us to have a chance at recovery.

We feel lucky that she is in such good care in the UK but we are also extremely angry that this care cannot be offered to her in her own country.

At some point we are hopeful that our daughter will feel well enough to return home.

Having said that, we constantly worry that the services that she desperately needs to sustain that recovery will not be available. If that happens, there is a very good chance that will relapse and the only option available will be to return to the UK.

Currently in our city, the medical director has told us that there is nothing here for her. This urgently has to change. 

Minister Butler, I implore you to help to ensure that these desperately needed services are put in place so that other families do not have to walk in our footsteps in the coming years.

Our main point would be that anorexic adults are unable to make decisions when very underweight. (Our daughter is 21)

Parents should be kept informed instead of being kept in the dark by the services and psychiatrists. 

There is NO proper transition from child to adult services. 

As 18 is only a number and when dealing with this killer illness it has little relevance. Anorexic adults are often lacking in insight to help themselves.

It just makes no sense not to protect these most vulnerable of mentally ill patients. 

There is a revolving door service from Adult Mental Health units to Medical units  and vice versa to rapid relapse again once home. 

It would be much more cost efficient  to provide a more focused  specialised service using experts in the field. This would achieve much better results and give adult patients a much better chance of recovery.

Many adult sufferers are in Community where the therapy is simply not available for them and they are left to struggle on and to die young.

I feel this to be morally wrong and the deficient Health Service is to blame. 

If it was any other area of Health there would be uproar. It's time we demand justice for our Anorexic adult children. 

Also traumatised parents have to go though court hearings to get Wardship for Nasal Gastric feeding. This is an inhumane way of dealing with this. In other countries the NG is provided simply when necessary without having to access it through a court system. 

This NG refeeding is often the saving nutrition  that can kick-start the starved brain into recovery. 

The trauma caused  to parents and siblings is intense. Our daughter was sick since age 12.

She had a lot of inpatient care but not enough psychology or specialised care and continues to struggle like so many others. 

I call on the Minister for Health to urgently provide the help needed immediately to avert more lives being lost. 

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 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. 

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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.

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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.

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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. 

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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.

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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.

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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 against my will. I would have 4 admissions there.

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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.

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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!!!

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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.

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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. 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. 

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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 teams in different cities 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.

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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.

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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.

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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.

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I would then need to be admitted to the psychiatric ward 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. 

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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, 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!!

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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. 

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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. 

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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.

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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. 

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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.

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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.

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I suddenly became very unwell and was rushed to the 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. 

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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 a city 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. 

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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.

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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. 

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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 

(republished with permission from the author)

It’s hard to know where to start, it’s been a life long journey really in so many ways.

When I was a child I would never eat and I am told my parents brought me to the doctor but at that time in the 1980s it was never going to be put down to any kind of disordered eating.

It's only over the last 6 months or so that I am remembering things about my childhood and I don’t ever really remember eating school lunches or dinners.

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I can always remember being anxious and quiet and afraid to talk to anyone for fear of looking stupid or not being listened to.

I had a bad time in primary school and just don’t like to think about that time of my life, I can’t even look at photographs of me when I was that age.

I have always hated myself and had no confidence and my attitude was to never look forward to something because then you can’t be disappointed when it goes wrong.

I lived my life like this and never did anything but just do what I was expected to do and that was to just never try because you will fail.

It's only now at 42 that I see how messed up that was and it's only now that I can see that I am good and I can do things and more importantly I no longer hate myself.

About 10 years ago I did an event that got me doing some exercise i.e. running.

After a while people would comment on weight loss and the achievement of running and doing a few races.

I was suddenly good at something and getting attention for something I was doing.

I remember starting to eat less and less and started to calorie count everything.

I would walk around a shop and anything over a certain calorie level would be a no go.

Carbs went, anything with sugar went, replacing foods with what are perceived to be healthier than the real thing.

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When it came to dinner time I would always have an excuse why I couldn’t eat and eventually this would lead to me eating the same foods every day no matter where I was.

Honestly it felt like years that I was doing this and at the end I couldn’t taste or smell anything.

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When something caused me anxiety I would get rid of it, I used to weigh myself everyday but this just got me so anxious that I stopped doing it.

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I knew if one time I hadn’t lost or if I had gained anything I would go into a panic.

To get rid of the anxiety of dinner I just started eating the same thing.

My exercise became so bad I remember being out running and I started to cry because I didn’t know how I was ever going to stop this.

I would get up every morning at 5am and run for hours and eventually these distances became extreme and if I didn’t do the kilometres that I had done the previous run I would be distressed and restrict food.

No matter what was happening in life or how bad the weather was I would not stop or take a break.

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At this stage I didn’t even want to drink water because I thought it would make me gain, I ran marathons and only did it for one reason, I never got any achievement out of it because it was just another run and it was only for one reason.

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As things progressed I started to take laxatives and my whole existence, every second of the day was about ED, I woke up anxious because I wanted to get out and run to burn anything off.

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I remember I injured my foot one time and kept running on it, I did so much damage the doctor couldn’t understand how I did it by what I explained to him as just going over slightly on my foot, he asked me had I kept running on it and of course I said no.

Even then I couldn’t stop and started to use my exercise bike, it was still a bit painful but the pain of not doing exercise was far worse.

I literally could not do anything without thinking of the ED and I mean when I was driving, watching TV, in work and even when my kids were born.

I would walk around shops and look at food and watch food programmes but never buy food of eat it, I started to recognise what I was doing and it just became normal to me.

I would actively go into a certain shop that had different foods that I would never eat.

My wife recognised that something wasn’t right and I went to the GP but the GP said it was just me being healthy.

I continued on and things just got worse, I was a shell and only existed for the ED’s commands.

I couldn’t concentrate or remember the most basic things, holidays or special events were all taken by my ED, I would bring my own food and only eat the same things.

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I only ate out with my full family this year for the first time and the sad thing is my kids didn’t know what to think because daddy just runs and eats different things and he doesn’t eat the same food as us.

I could write 10 books on my ED and things that I did and how much pain it has caused, it's absolute hell.

I got to a point where I just wanted it to stop, I just wanted to go to bed and wake up and run and then go to bed again because I just wanted to disappear.

The ED went in for its final phase and at that point I was gone, I didn’t care about anything I just didn’t have the energy to exist.

I went to the GP again and I was put on medication for what I was told was OCD, each time I went back the dosage was put up.

After a while I went back and said its not working I need more help, I was given the name of a therapist.

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After a while visiting the therapist she told me that I needed more help and got me the details for a private hospital that had an eating disorder service.

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It didn’t take her long to figure out that I had an eating disorder, me getting into hospital when I did was because she cared so much.

I went back to the GP who then referred me to the private hospital, eventually I would need to go in for an assessment.

I knew I needed help and I wanted them to tell me that I needed help, deep down I was in fear that they would say no you are ok.

They told me that my health was seriously compromised and I needed to come into them as soon as possible.

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The doctor asked me did I have any idea what was wrong and I just couldn’t answer really, she told me that I have anorexia nervosa.

They told me that I had to stop doing anything that could cause exertion, I didn’t know what to do and I couldn’t take anything in.

I got home and asked my wife to call them and ask what was happening, I remember hearing the nurse tell my wife that I was seriously ill and I could be an inpatient for a minimum of 12 weeks and then a further 9 weeks as a day patient.

Of course I could barely walk but as soon as I got the chance I was on the exercise bike, although it was only for 5 minutes the ED drive was so strong even after being told that I could die if I did any further exercise.

The ED voice can get so strong that you just do what it says and no matter what anyone tells you. The night before I went into hospital I turned to my wife and said I don’t think I need to go into hospital because I haven’t been thinking about it as much the last day or two.

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She said to me ‘’Sean you are living with this for years, it’s the ED that is trying to trick you and stop you from getting better’’.

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It's frighting what it can do and how devious it can be, if I had not got the help when I did I would no longer be here.

I woke up on a Sunday morning and remember sitting on the end of the bed just crying and thinking what is happening.

My four kids are young so they thought I was going into get my leg fixed.

My wife and me arrived at the hospital and before I knew it she had to leave and I was waiting on my own.

A nurse came and got me and brought me to the ward and I was introduced to everyone.

If anyone has had that experience they will know how hard it is but when you get to that point it’s the only way.

The ED has taken full control at this point and I just needed to be stopped it was the only thing that was going to stop me.

The first while was so hard I missed my wife so much, we have been together since we were 19 and have never been apart for more than one night, with the exception when the kids were born.

I cried for days and nearly left on day 3 but I am so thankful I didn’t because I wouldn’t of made it this far if I had. The staff in the hospital were amazing and were always checking in to make sure everything was alright.

I had to pretty much learn to eat again and go through refeeding but as I got nutrition I started to think straighter.

It was the hardest thing that I have ever had to do but as time went by I could see that there is hope and people do get better. 

I didn’t know what better looked like and if I am honest I still don’t but it was something to hold onto.

The other service users were amazing and they were one of the reasons that I got through it while I was in hospital.

It helps so much being around people who understand and know what it’s like to suffer.

I felt guilt that I had left my family and my wife alone and especially my wife who had to watch me over the years getting worse and worse.

She was left trying to keep everything together with 4 kids and a demanding job on top of everything else, this was all at Christmas so I wasn’t around for all the Christmas festivities and Santa visits. I will never know how much trauma she went through over the years and in fairness still does worrying that I might fall back at any stage.

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I was lucky that I have had continuity of care and for over a year now I have been either in the hospital or on the phone to them at least once every week. I had access to a full MDT [Multidisciplinary Team] and all the specialists that I could ever need and still do have that access, this is partly why I am where I am today.

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I am not recovered and still have bad days but I can deal with them better and the self-hate is no longer present.  

I did Compassion Focused Therapy for Eating Disorders and this has been a massive turning point for me.

I have started to understand why I had so much hate for myself and what the causes might have been.

I still need to do work on everything but I know that its not my fault and its part of something deeper.

I had always heard that it’s not about the food or how you look but now I completely understand that.

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If I had not explored the ‘’why’’ I would not feel as confident now, you can go through the inpatient and day patient but we need to understand it before we can challenge it.

Talking about it and writing about it helps me in my recovery because its calling the ED out and exposing it for what it really is.

It’s a killer and destroys the life’s of people and their families, it stops people from doing what they desire and deserve to do like school, college, work, family life and everything that comes with life.

All the people I have met while receiving care for my ED, I can honestly say are the best I have ever met and I genuinely mean that.

It saddens me to see how we don’t have the help for people that they deserve.

More needs to be done to have the right services for people and services that are not only available if you have health insurance like me or because of your age.

While still in recovery the future looks brighter and I always remember that it's ok to be sad or cry but it’s also ok to laugh and be happy but most importantly it's ok to like/love yourself.

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