Meet EmpowerED Expert by Experience, Mandy
Hi, my name is Mandy. I am happily married and have 3 beautiful children, aged 21 – 13. We also have a 3-year-old beagle called cooper. We are a close family and have always enjoyed spending lots of time together. I work as a district nurse team leader.
Emily is my middle child, she is beautiful, clever and talented. She had always excelled in school but had always dreamed of being a professional dancer. She had danced from the age of 6, then she successfully auditioned for a top dance college and was accepted onto a programme which she started in September 2020 when she had just turned 16.
Anorexia revealed itself to us back in November 2020 when I caught Emily going to college with just an apple, bear in mind she had 6 hours of dance ahead of her. We have since discovered that it had been part of Emilys life for at least a year before we knew.
The guilt I feel as a mum is immense, for not knowing that she was battling every day, for explaining ‘signs’ away, I noticed when Emily cut down on fatty foods, she wasn’t able to dance because of lockdown so it was only natural to cut back.
Then she started at dance college so of course she had lost weight as she was dancing more intensely than before; her periods had stopped back in January of that year however we had escalated this to the GP and she was awaiting a scan. Everyone tells me it’s not my fault but as a mum and a nurse I should have noticed.
The first thing I did was book a GP appointment. They agreed that Emily needed help and stated they would refer her to a specialist eating disorder service. Unfortunately, things deteriorated very quickly, it was like because we knew anorexia was here it escalated tenfold.
The next 3 weeks were horrific, I watched my confident, sassy girl become withdrawn, argumentative and depressed. I contacted the community eating disorder service daily to see if they had received the GP referral, chased up with the doctor when it would be sent, I was told on each occasion that the referral would be sent as soon as possible. 3 weeks it took for the GP to confirm the referral was sent, by this time anorexia had taken over our lives, Emily was no longer physically well enough to dance, she was living on less than 500 calories a day and the scariest thing for me was she had developed a fear of fluids, felt every time she drank, she gained weight. It was so scary watching her waste away before our eyes. She was withdrawn, emotional and physically unwell.
There was nothing we could say to make her understand the damage she was doing. At this point I felt like I had no choice but to take Emily to A & E, she was only 6 stone, and her observations were considered to be at a dangerous level. Emily was in complete denial that she had a problem, thought we was making a big fuss over nothing. She was admitted to a general children’s ward with no hesitation.
Emily spent the next 2 weeks in hospital, from the second we walked through the door I felt isolated, like I was not able to look after my daughter. I spent the bulk of my time sat in a box room, unable to support my daughter at mealtimes, unable to eat with her, we both ate alone, she had a stranger staring, watching every mouthful, not eating with her, some tried to have a conversation with her, others just watched her eat.
This added to the distress of being in hospital, she has since told me she felt she was being punished. I wasn’t even able to take her to the toilet. She was put in a wheelchair, unable to walk, she was timed taking a shower, she was put on a strict meal plan, if she couldn’t finish a meal, she was given ensure drinks to compensate.
She was depressed, suffered bloating and felt constantly sick. I understand the science that you have to fix the physical before the brain can process the mental, however I felt utterly deflated, there was no mental health support for Emily, just constant tests, food and weigh ins, at no point was I offered mental health support to help me deal with what was happening, our whole lives had been flipped upside down in a very short space of time. Due to covid I was not able to split my time between home and hospital, it was considered an infection control risk, I felt alone and guilty for the children I had at home. Emily quickly realised what she had to do and say to be allowed home so followed the plan, eventually she came home physically a little better but mentally a mess.
Following the hospital visit things deteriorated again, she suffered every physical symptom, dizzy, cold, palpitations. Her mental health also deteriorated, she was depressed, anxious, petrified of gaining weight, she was withdrawn, wouldn’t converse with anyone and she had a severely distorted body image. At this point CEDS offered us support in the shape of online teaching sessions to learn, I suppose that was the best that could be offered due to covid. The sessions were interesting however I feel that they were impersonal, multiple families sat at home watching a screen, unable to interact with each other.
The sessions shown us the physical issues and diet advice but not how to handle the meltdowns, not how to sit around the table and try and have a normal conversation with my 12 year old son about his school day while his sister screamed, threw food and stripped down to her underwear pulling at her skin telling us she was disgusting, not how to snap her out of the deep depression and the anxiety if food was even in the same room. She also had an online review by the consultant. Other than these online sessions we would attend for weigh ins and health checks every 2-3 week. No other support was offered early on.
After a couple of months, and constant asking we were offered family therapy. Myself and my husband and Emily attended these sessions, her sister attended a couple, her younger brother was deemed too young.
These sessions were good, they helped us understand Emily a little more and gave us techniques to help deal with the meltdowns and refusal of food. However, I felt that Emily was often prompted and sometimes words were put into her mouth about how she was feeling, she would say anything she thought they wanted to hear, she became very good at this. Some of their sessions were really good, some felt a bit repetitive and aimed at younger children.
At this point Emily was battling every day, she slept a lot, she rarely smiled, we had to watch her take medications, monitor her meals and were constantly walking on eggshells. We couldn’t trust her. She cried every day. Mealtimes were a constant battle. Myself and my husband separated, we just didn’t know how to communicate anymore in a constant battleground, I suffered with anxiety and became withdrawn myself, too scared to face people and questions.
As I’ve said earlier one of the things that was the biggest issue was the fear of fluids, to the point where Emily was readmitted to hospital following another trip to A & E. She had drunk less than 200mls that day. Back to the children’s ward, to the box room, to being wheeled to the toilet. During this stay Emily was on a ward with 4 other teenage girls, all with anorexia, one was a girl from her college. All their parents felt at a loss, felt isolated and felt like these girls needed more mental health support. It felt nice to know we were not alone but sad that so many people were facing the daily battles we were.
The hospital stays highlighted how little some of the staff knew about eating disorders, considering how prevalent they had become. There were comments from Doctors, Nurses and Healthcares like ‘I couldn’t eat 2000 calories a day’ or ‘I never eat breakfast’ or ‘I had a yoghurt for dinner’, mostly innocent comments but for Emily it just made her question why she had to eat if nurses didn’t. This really affected her mental health but again she ate to be able to come home and said the right things.
Following this stay I emailed CEDS and the ward manager asking for more education for the staff, not to complain just because I felt like more support was needed, we had become used to saying the wrong things and realised the impact innocent comments could have. CEDS told me that they would liaise with the ward however no one has fed back if anything was implemented.
Emily was eventually offered CBT which I feel was the thing that helped the most, she was able to talk about her struggles and work on techniques to help although she had the minimum about of sessions and was deemed to need no more. I personally feel more sessions were needed to get to the root of the problem, I still feel she has not told us the whole story and fully dealt with the issues. She also had some sessions with a dietician to support her meal choices. During the 2 years Emily has been under CEDS she has had 2 different support workers, the first was lovely and tried to get to know Emily and myself, the second didn’t even introduce herself until we were looking at discharge planning, unfortunately by this point Emily had relapsed again, we asked for a further CBT session and dietician appointment. She had one CBT session but was unable to have more due to capacity, we gave up on the dietician appointment as things kept getting rescheduled for various reasons.
Emily has just turned 18 and I am pleased to say things are better, we are nowhere near ‘normal’ I’m not sure we will ever be normal again. The last 2 years have been a rollercoaster of emotions. Luckily things never got to the point of an inpatient unit although this was discussed on a couple of occasions.
I can’t pinpoint what changed with Emily and what convinced her to enter the recovery stage, I would say that’s where we are now. Emily still has good and bad days but, as a family, we have learned to live with the eating disorder always lingering in the background. Emily is a healthy weight; she made the decision not to return to dance college but is now completing A Levels and is looking to go to university next year.
I am so proud of her but feel incredibly sad that she wasn’t able to continue her dreams. She is physically well and a healthier weight, finally got her period back after 26 months with none. She still takes tablets for depression, still struggles socially and doesn’t really have any friends, she still battles with a distorted body image on a daily basis, still has meltdowns although these are very few now.
She occasionally tells us she was better off with anorexia in charge although I don’t feel she really believes this, I just think she sometimes struggles with the thought of adulthood and growing up. However, Emily now smiles and has fun and is building in confidence every day, we are definitely getting our daughter back. The relationship between Emily and her siblings really deteriorated at the height of her illness, their once close relationship turned into arguing and more of a carer role, her dad struggled to find his place, she only wanted me, he felt quite isolated. Luckily all these relationships have improved massively. We are in the process of being discharged from CEDS, the decision was made she was no longer poorly enough to transition to adult services. She was handed over to the care of the GP, I was told they would be doing physical health checks back in May; however, we have had no contact with them in nearly 2 years.
I suppose as a nurse I understand the pressures on the system and understand not all services could deliver as before, covid has changed services massively, however I also know how things should be done and know that patient care should never be compromised. I have fed back all my issues to the service but have not yet had a response.
As a mum I feel let down, not by everyone but by some, I feel there needs to be more support for, not only patients, but for families, parents, siblings, my son had no support, when I highlighted to the school, they just asked me what I wanted them to do and said they would keep an eye on him. I have been emailing and asking for support and education to be implemented into schools as I feel there is such a focus on healthy eating that there needs to be a balance, eating disorders should be talked about and support offered to everyone involved.
I don’t know what the future holds or the long-term impact on my family and my kids, but we are strong and will continue to fight. I have since set up an Instagram page, with Emily's permission, documenting from a mums point of view. I have had multiple conversations with mums who are concerned or who are going through the same battle as us. Its sad to know there are so many others out there but it has been nice to be able to offer support and advice. I wouldn’t wish anorexia on my worst enemy, I knew what it was before it entered our lives, but I could never have imagined the impact it would have on mine and my families’ lives.