**This piece may be triggering.**
It’s Eating Disorder Awareness Week – something that is very close to home for me. I wanted to write something to share with you a snapshot of my life currently, void of my own mental health and the associated struggles, but to highlight a highly misunderstood mental illness that my daughter is currently fighting.
This blog piece is incredibly difficult for me to write for a multitude of reasons and is likely to be a long one so please, please bear with me and read until the end. You never know when you’ll need the insight and information listed below.
Starting to write this I have no idea where I’m going with this piece and what shape it’ll take because Anorexia is currently holding my child, myself, and my extended family hostage and I am struggling to put into words how I feel about all of this. Right now, the only thing I can do is survive. Get through each day and support my child where I can whilst holding hope for both of us that anorexia is silenced enough that she can find her voice again.
This piece does not go into all of the detail as there’s too much to encapsulate into one blog piece.
The truth about eating disorders.
- It is thought that 1.5 – 3 million people are currently living with an eating disorder in the UK alone.
- Males do get eating disorders – 25% of those living with an eating disorder are male. As with all mental illnesses, it doesn’t discriminate.
- Eating disorders as a whole have the highest mortality rates amongst psychiatric disorders.
- Anorexia Nervosa affects 10% of the people in the UK living with an eating disorder. It has the highest mortality rate of all psychiatric disorders in adolescence with statistics suggesting a mortality rate of 20%.
- 40% of the people living with an eating disorder have bulimia.
- The rest of the people living with an eating disorder will fall into the BED or OSFED categories of eating disorders.
- Early intervention is key to recovery.
- Many people think eating disorders (ED’s) are about vanity, which is not the case. ED’s are generally about control.
- Some studies suggest a genetic link between disordered eating in families and some suggest trauma to be a trigger. The truth is that the trigger may never be discovered, even once the individual has undergone intensive treatment and therapy.
The signs of disordered eating
Here I will list a number of suggested signs by various sources, and then I’ll go deeper into my own experience with the signs I noticed with my child. Some of the following will be ED specific and some will be general to ED’s as a whole.
- Dramatic weight loss
- Fluctuation in weight
- Eating a lot of food, fast
- Going to the bathroom immediately after eating
- Lying about how much they’ve eaten or about their weight
- Avoiding eating with or around others
- Cutting food into tiny pieces
- Eating very slowly
- Wearing loose or baggy clothes – this hides weight loss
- Controlling behaviours in the kitchen during meal preparation
- Excessive exercise
- Having strict habits or routines around food
- Favouring fruits and vegetables over other food types
- Mood changes and fluctuations
- For women, a cease of menstruation
- Changes in bowel habits
- Hair loss
- Skin changes
- Feeling cold
- Preoccupation with weight and diet
- Distorted view of body image
- Checking the mirror more often than usual
- Withdrawal from friends and interests
- Sleep problems
- Dental problems
This list is merely a snapshot of signs and symptoms of an ED. For more information, I recommend Beat, the NHS, and National Eating Disorders dot org who have a comprehensive list of signs and symptoms if you are worried you have an eating disorder or you’re worrying that a friend or loved one has an eating disorder.
The signs under a microscope
Here’s where it gets tough. Talking about my personal experience with the above, what I noticed, and more importantly, when I noticed. What I write here is not in any way meant to put the fear of god into anyone, it’s just my experience as a mother of a child with Anorexia in particular.
Hindsight is 20/20 apparently and this couldn’t be more true here. The point in which I started noticing an issue was the point in which things spiralled very quickly and my daughter spent days without eating or drinking anything.
Noticing the ED was evermore difficult because of a number of other disorders my daughter has and the prior 2 ½ years we’d fought a heart condition together, hand in hand – which totally changed her life and was hugely traumatic and unpredictable. I mentioned above that triggers may never be discovered, but we believe at this point that her heart condition and the trauma from this is the trigger. Control was taken from her and was put firmly in the palms of her condition along with the surgeons and specialists trying so hard to fix it. What should have been a one procedure fix, turned into 3 procedures under 7.5 hours general anaesthetic each time along with a bunch of pretty hefty heart drugs, side effects, emergency ambulance journeys, years on and off school and away from friends, along with living in the high dependency unit of Great Ormond Street, over 100 miles away from home.
All of the above affected her mental health and caused a huge amount of anxiety which was being helped by a wonderful therapist in CAMHS. If I look back now, there were probably faint signs 3 months prior to my noticing she had an ED. Wearing baggy clothes being one of them, feeling cold a lot being another. It wasn’t until her ED put her in hospital, multiple times over the course of a month, that I started looking back and noticing more and more of the symptoms I listed above. In fact, at the worst point of the anorexia, she had around 95% of the symptoms above plus more on top.
Realisation, guilt, blame, and education
Eating disorders bring a lot of guilt both for the person living with the eating disorder and the families and loved ones of the person living with the eating disorder. As a parent, I began by asking, “was this my fault?” and “have I done something to make it worse?” The answer to these questions is almost always no. Of course, I know this now but initially I blamed myself rather than accepting that my child is unwell and I need to be her strength while she is lost to the voice of anorexia.
Realising and coming to terms with the fact that my daughter has a life-threatening mental illness was tough, but getting her to realise that she had an eating disorder was much more challenging. Anorexia was angry with me, hell, it’s still angry with me and anyone else that goes against its own ideas. There was a lot of anger from anorexia – not from my child. Externalising the eating disorder is so important – it helps both the person with the ED and the parent, carer, loved one, friend too. Every time my daughter was mad with me (and still gets mad with me) it is hugely helpful to remind myself that it’s not my daughter that is mad with me, it’s the ED.
As soon as she received her diagnosis, I began extensively researching anorexia and quickly realised that with eating disorders there is no one-size-fits-all approach to treatment. One thing that was apparent however is how family based therapy is used to help and educate the individual with an ED alongside helping and educating parents, carers, and family members. Other than this commonality, there really isn’t a standard approach as everyone responds differently to therapeutic treatment. Educating myself was daunting and scary, but also helped me to understand the why’s and how’s – it helped me get my head around eating disorders and how with compassionate support I can help my daughter. Education is key.
At home, through help from the community eating disorder team, who are a part of CAMHS, I was able to support my daughter to be compliant with meal plans and weight restoration. This is a terrifying time for anyone with an ED because the last thing their ED wants is to gain weight. There are many stages of meal plans for weight restoration – some of which are really tough to complete, however, I felt in control of mealtimes and in my ability to support her through each mealtime. Of course, there were meals that weren’t completed, but we moved past those to the next mealtime and the next meal was often completed. That was until her last relapse…
It was the day after boxing day last year. I’m paraphrasing here but she’d received a message from a friend who told her that she didn’t need to eat if she didn’t want to and that no one could make her eat. To put this into perspective with regards to the effect those kinds of statements can have on someone with an ED, it is akin to giving an addict some heroin.
At this point, anorexia was louder than my daughter and she ended up being hospitalised on January 1st 2020. Initially, this was in a local children’s ward in hospital, which wasn’t equipped or knowledgable on ED’s and to a degree most likely hindered progress that could have been made. The following days were some of the most difficult I have endured. It almost ended in a section under the Mental Health Act. Thankfully, we narrowly avoided it – instead, she was assessed by an in-patient eating disorder unit, who agreed that she needed admitting.
This was hard to swallow and those common themes of guilt and blame resurfaced for me. I had managed to get my daughter through previous bouts of not eating, why couldn’t I do that this time? It’s my fault. I’m to blame. I felt so guilty that she was going to be miles away from home in an environment even I would be terrified of being in. I was scared of the concept of the inpatient facility. When this option had been discussed prior to this assessment, I had vehemently stated that I thought being at home and working with the community team was the best option. However, this changed. The first week in January was hell for us all. I was heartbroken. Worried for my daughters’ life. I had to trust professionals to keep her safe and give her the 24/7 help she needed. I was tired, exhausted. Barely sleeping. Checking her throughout the night in case she had passed away while she was asleep. Anorexia had controlled all of our lives for long enough and now I needed to accept the support of the ED centre for her, for us all.
January 7th 2020 is not a day I will forget in a hurry. I drove my daughter 50+ miles from home – straight from the hospital she’d been admitted to for a week. I won’t go into the admission process in detail here but if you’re a parent with worries about this topic, please contact me via the contact page and I’d be happy to talk to you.
Admission was quite a long process, especially with my child as there were lots of other medical things I needed to highlight and give information on. Once all of that was done, we sat in her new bedroom. Magnolia walls. Desk. Wardrobe. Bed. Bedside table. Chair. Plain but functional – yet kinda empty. The idea is that the inpatient makes their room their own. And now? It’s a lot different to that day.
Leaving her there was the hardest part of the day. We both cried. I continued to cry on my way home. I felt bereaved almost. I knew she was in the right place with the right level of medical and mental health support and expertise – I just had to keep reminding myself of this. The day I left her there, I left a part of me there with her, and it still remains there with her to this very day.
Today, my daughter has been an inpatient for 2 months. Eight weeks of being away from home. Eight weeks of being away from school and her friends. Eight weeks of battles with anorexia – some it wins, some she wins, sometimes it’s a draw.
I’m learning more and more as I fight this battle with her. I am learning the battles I cannot win and have to compromise on and I’m learning which battles I must win in order to be the one in control of anorexia. I’ve learned when I am talking to anorexia and when I am talking to my daughter. I have learned how to be ever compassionate even in the face of anger or indifference. I have learned so much about ED’s as a whole and things I should and shouldn’t say to someone with an ED. I have learned that I fight in many different ways and sometimes that means me knowing when to step back and hold hope and trust in my daughter to fight, with me right behind her every step of the way.
I have learned so many things about my daughter and her strength, determination, and resilience. She doesn’t see what I see, but she inspires me every day – even when anorexia tells me it hates me. I have learned how to be creative and flexible in the way I parent both of my children. I’ve realised how much I not only love but like my children. How much I enjoy their company, their humour, and their insightfulness.
I have learned a lot about myself and my own strength – the times I feel the weakest are usually the moments I am being stronger than ever before. I’ve learned that my love is enough and that I am not to blame. I’ve learned that despite what my own self-doubt tells me, I am a good parent, who will absolutely go to the ends of the earth to do whatever is needed to support my children. I’ve learned to enjoy every single smile and every moment in this lifetime that presents itself to serenity.
Whilst our journey isn’t over yet and there are still days that are hard and painful, I still hold hope. For the both of us.
I won’t name the inpatient centre without express permission, however, should they read this, I want to thank them for their patience, care, knowledge, humour, support, openness and transparency, and for their cuppas – cause we all need tea (or coffee). To her community team – the short while we worked with you prior to admission, you have no idea the impact you had on my knowledge of everything. Thank you. You guys made me feel like I wasn’t alone in all of this and that means the world.
I will undoubtedly write more about this topic and our journey, but until then,
Here’s to recovery. xo