A Mothers Love - Through Thick And Thin

As a mother there's a journey that you never want or ever expect to embark on! The realisation that the the little girl you gave birth to, has an eating disorder and wants the life that you so dearly created to end. How I cope and how you can too.

Eating Disorders are one of the most misunderstood mental illnesses, yet they have the highest mortality rate of any psychiatric illness. The high mortality rate is usually due to dangerous medical complications from the strain on the body and suicide. There are many different types of Eating Disorders including Anorexia Nervosa, Bulimia, Binge Eating Disorder and Orthorexia. They are often secretive, manipulative and isolating illnesses that severely affect the quality of life of the sufferer and those that care for them. Today I'm here to give you an insight into the harsh realities I faced as a carer and mother of someone with Anorexia.

Embarking on the journey

When I first discovered my daughter had Anorexia Nervosa I was primarily shocked, confused and scared. Things like this didn't affect families like ours. We were stable, reasonably well educated, with no real history of trauma and lived a relatively normal happy life. I hadn't seen it coming, yes I'd noticed she'd lost some weight but it escalated so quickly the signs were only really visible once it had really got a grip. I knew very little about Anorexia. In all honesty I'd never really thought about what it was. I'd assumed it was a choice not to eat in a bid to become slimmer, that then got out of hand because the person couldn't see like others how skinny they'd got. A diet that got out of control. Naively I thought the answer would be to convince the individual how skinny they were and they'd then concede and start eating. Part of me knew it was more than this but only because I'd heard snippets about it on various media platforms. I'd never considered it as a mental health condition, neither did I know just how serious it could be.

Catapulted into a world I knew nothing about, no real protocol, no handbook, minimal guidance, no respite care and minimal peer support. I felt instantly isolated, overwhelmed and terriified.

Being admitted straight to a general paediatric hospital ward during my daughters initial consultation with the specialist eating disorder team, although devastating, felt safe and encouraging. At last someone would tell me what needed to be done and how we were going to do it. She was in safe hands with professionals that knew what they were doing.

Little did I know, that although my daughters physical health was duly looked after and monitored, mainly for symptoms of refeeding syndrome, (which is a potentially fatal condition, that can occur with sudden shifts in electrolytes that help your body to metabolise food in the early stages of reintroducing food) in my particular experience no one really appeared to know what they were dealing with or how to get her to physically eat. It was a general ward and the nurses and doctors were not trained in this specialist area.

We were told indirectly that she needed to work up to 2500Kcal a day before she'd be able to leave the hospital (she'd been eating under 100Kcal a day for at least a month previous).

I was given some leaflets and hospital menu's and a handful of rules-:

- Three meals and three snacks a day which added up to the daily numerical goal.

- 45 minutes for main meals and 30 minutes for snacks

- I was to eat with her at all times.

- I had to accompany her to the bathroom

- Complete bed rest

Simple!!

But every meal time was heartbreaking. Every attempted mouthful felt hopeless. Greeted with a despondant, distant, empty shell of a daughter that was once engaged, warm and enlightened.

The care was inconsistant. Some nurses wanted to take control, others asked what we needed. Sometimes meals would be whisked away if uneaten within the time frame, other times left for hours. Some took an authorative approach, some gentle and reassuring. Most just left us to it. No one knew my daughter and neither did I now. I was confused, bewildered and unsure of what was going on, meanwhile my daughter cried almost constantly, listless and withdrawn. It was during those moments, I knew it was going to be down to me to navigate each part of this journey on my own. I had to learn a new skill set and quick!

Knowledge is Power..

Whilst laying around in the hospital ward I ordered books, read articles online and researched every question imaginable. I joined the charity website Beat and searched for support groups. I dug deep into my psyche, exploring my empathy and psychological toolbox. How would I feel? What must it feel like? What parts of my personality am a I going to need to employ to gain strength in this battle? Which of my life experiences could help me and in turn help my daughter? Its an all encompassing illness, where you become one with the sufferer, living and breathing it as if it were you. I felt the pain, the fear, I could almost hear the voices in her head. I had to come from a place of strength and great compassion, my positivity, patience, resilience and creativity had to lead the way. The biggest challenge I'd ever faced, saving someone's life and one where I had no option to fail.

Coming to terms with the reality

To say it wasn't tough would be a complete lie. One of the doctors had told me I'd need to give up my job and care for my daughter full time! I was a single mum to two children with a mortgage, I was self employed and as well as losing my income and keeping a roof over our heads, I'd have lost my entire client base and the business I'd built over the past 12 years. It wasn't an option! I ended up working only the bare minimum inbetween meals, from the hospital side table, armed with a laptop and bags of paperwork kept under my bed. I often had to stop to to comfort, reassure and distract my daughter from her thoughts. I made fleeting trips to offices, always on a time scale and often taking calls and messages from both my daughter and my family, who were doing there best to cover the time I was away. No one was armed with the small toolbox I'd already created and everyone looked to me for guidance. The pressure for my presence at the hospital was huge. The time I spent in the car was the only time I was alone and the only time I could be weak and vunerable. The time when I would experience every emotion possible, guilt, anger. frustration, despair. I sobbed heart wrenchingly for entire trips and how I'd managed to keep myself safe on the road I'll never know! Thank goodness no one could hear the expletives I callled them from behind the wheel. My road raged filled brain was intense.

On return to the hospital my alter ego would take over and my alternative self would resume duties. I became a whizz at Uno and the card game Go Fish. I became familier with many you tubers I'd never known existed. I was gaining an entire new knowledge of teen life and even picked up a few teen slang terms - Dang it!

We made it through meals gradually by hook or by crook! Anything that distracted her mind was my ally, even if it was the most boring programme or quiz I'd ever done - it had merit in my eyes. Faking the interest until I almost convinced myself it was interesting! A bit like the unnatural interest I used to take in the Teletubbies when my kids were young. Slaying it I was!

A lot of distraction, endless patience and finding a source of motivation ( to leave the hospital in this case) were what enabled her reluctantly to have the medicine (Food) she so desparately needed and allowed us to be discharged home three weeks later medically stable.

That was just the beginning...

And this is where the fun really started! And yes, I have a slight sarcastic humour to my story telling! I can tell you it's about as far reached from fun than you could possibly imagine and some!

After arriving home she went back to refusing to eat again. Of course I had to find another motivation for her to eat. I mean I had plenty of reasons but trying to convince her that if she didn't eat she would die, was not important in her eyes. She hated life, she hated herself, she hated anyone that tried to get involved and I was mostly just tolerated.

The best form of persuasion I could find was, you have three choices:

1) You eat with me and have my loving support around you.

2) You go to an impatient setting on your own, have all of your privacy and privaledges removed and probably be fed with a nasal tube - either way you're being fed.

3) You refuse to eat and die - of which this is not an actual choice as I won't let it happen and we'll revert to choice 2!

The option to eat by the way is not as simple as it sounds with her just saying oh ok then I 'll just eat because you've given me no choice. It was just one small tool I felt I could use to get her to try.

There's an immense very real fear attached to the actual process of eating maybe like me telling you to jump out of a plane at 15000 feet on your own over and over again. Of course having someone attached to you, who knows how to do it safely, helps make it a lot less terrifying but still really scary and that became my job. Teaching myself to be a skydiving instructor over a short period of time and with no previous experience was not going to be straightforward. In fact it would have possibly be an easier option than what I was actually about to do.

The Early Days

In the early days as a carer of someone with Anorexia I was spending around eight hours a day just supporting meals, planning, prepping, weighing, calculating and logging food diaries. I had no dietician or meal plan to follow but you could say I was lucky, I already had a good understanding of food and nutrition, thanks to my own journey with physical fitness as well as a mathematical background due to my work. So this was something I was able to do with relative ease.

I quickly learned that the challenges we needed to face were't limited to the act of just eating the food, even though that was difficult enough. There were some foods she feared more than others, certain cutlery she refused to use, she wouldn't eat in front of anyone else, even her own dad or sister. On top of this, disliking everyone and not wanting anyone else to be involved in her life left me very isolated and with little time for myself. We couldn't visit a restaurant or even a supermarket, as her anxiety hit the roof being around any type of food. We couldn't travel far from home as she wouldn't even contemplate eating outside the house. The windows of time between meals and snack were so small, there was virtually no time to fit in anything else. We were pretty much housebound and alone and this was before the national lockdown!

If I needed to go to an office for work, she'd often come with me so I could make sure she wasn't harming herself or engaging in any counterproductive behaviours after eating, such as exercising or purging. Remember her brain is telling her that it's wrong to eat and if she has eaten, the immense guilt she feels will drive her to do anything she can to get rid of what she's had and punish herself. We'd always have to be home by lunchtime and that's pretty much where we stayed.

A typical day for me would start at 6am and finish around 1am. I had very little sleep as my daughter was struggling mentally and emotionally and we'd often be lying in bed chatting, with her crying (and me desparately trying not to) and doing quizzes to drown out the ED voices in her head. The voices I'm talking about are not auditory hallucinations but more of a constant berating in her mind, you've eaten too much, you're fat, you don't deserve to eat, you've failed again, everyone hates you anyway. From what I can tell and what I've learned, Its like an abusive relationship with your mind.

Every night she had so many questions and views about life that she had no cognitive ability to understand the answers to. She was 15 but it was like trying to reason with a frustrated, emotional 4 year old who didn't want to participate in any part of life. She slept with me every night for just under a year and this was pretty much the norm.

I was exhausted and lonely. I felt trapped and unable to participate in the normal parts of daily life, like seeing my friends or having a night out, let alone starting to re build my now single life back up. I had plans to grow my business, start dating again, travelling and experiencing new things. I was certainly experiencing something new but not in the way I had intended. I occassionally planned the day so I could leave just for a bit in between feeding times, just to get to the gym for an hour or have a walk or a coffee with someone. Those moments were much needed but always tainted with guilt and an urge to return home as soon as possible. I longed for the days I'd once had, that I'd taken for granted. The shopping and lunch day with my mum or drinks and games at my friends.

Support

So called Professionals in the field and medical teams had very little communication with us. They stopped engaging with us and I had no energy left to battle for guidance. Access to services were not local, the availability of appointments was scarce and to be honest, when we did participate in the meetings they were always detrimental to any progress we had made. My daughter would come home unwilling to talk or eat for hours, she'd be angry. despondant and aggressive. It took us days to repair the progress lost let alone move forward.

My parents tried to support me best they could and a couple of close friends always checked up on me but I think one of the worst things for me was the way hardly anyone seemed to understand the turmoil going on in my life. Don't get me wrong I wasn't looking for sympathy but I felt forgotton and unjustified in my grief. I also felt abandoned by the health system and all I really needed was reassurance.

Its isolating going through something so devastating, feeling like you're in a bubble all on your own. Tears no one can understand and a sense of pain and heartbreak no one can feel or even empathise with. Well meaning questions directed at you, that really have no relevance to the actual situation. It becomes easier just to say everythings fine and shrink into your own little dark place and paint a smile on for the rest of the world and cry in silence.

Learning with Strength and resilience

One of the other lessons I learnt over a longer period of time, is that recovery from an Eating Disorder is not a linear process. It does not change or progress straight from one stage to another and there is no clear ending point. The process is a long, complex, winding dirty road filled with potholes! It requires a huge amount of strength and resilience.

The Anorexia tries to deceive you by manipulating your loved one into misleading you. I'd be thinking we'd made headway or I'd had a breakthrough, I'd feel slightly exhilerated and positive, only to realise that non of it was true. Uneaten food found in blankets and down sofas, filled bottles of masticated food spat out whilst drinking, evidence of purging in the toilet, exercise diaries and notes, batteries, coins and alike hidden in clothing to falsify her weight gain and so the list goes on. I'd feel betrayed and cheated. Each new revelation thrust me back to square one disheartened and discouraged. I lived my life on egg shells, always looking at everything suspiciously, trusting nothing. I didn't recognise myself anymore. With every revelation, I'd have what felt like a well needed breakdown, before picking myself up and gathering my resilience to push on once again, invigorated to be stronger than before. New energy, new ideas and an ever increasing determination to suceed.

You Got This

The journey of caring for someone with anorexia is really tough, emotionally, mentally. physically and financially.

Together we've been through battles no one will ever truly understand, unless they've been there.

We are in the best place we've ever been on this journey but I will never let my guard down and there are still many more rivers to cross before we can say we've beaten this demon.

We've both felt broken and lost many times but what we have gained is the most amazing friendship and connection on a level we probably never would have. We are stronger, more resilient and appreciative for the things we have and we have an unbreakable bond.

If you are struggling in the same position as me, please know that there is light at the end of what may feel like a very long tunnel. You don't have to be alone. Please reach out to me. Believe you have the inner strength to see this through. You are more capable than you realise and you will likely become a much stronger, resilient version of yourself.

Give yourself the credit you deserve, you are one amazing human being, entrusted with the biggest task you will ever hopefullly face. No one said it would be easy but it will most definately be worth it!!