Carers Week 2023 - Sophie's story

Eating disorders affect not just the people directly suffering from them, but their loved ones too. This Carers Week, we’re taking the time to remind everyone supporting someone with an eating disorder – our support services are here for you.

In this poignant letter to her past self, our supporter Sophie shares her experiences of caring for her child through their battle with anorexia.

Content note: This blog contains material which some readers may find upsetting. If you are feeling in need of support, please visit the Help pages of our website.

You are at the beginning of a journey that will change your life forever, and yours will be the ONLY life that is changed forever. Harsh? Yes, it is. But anorexia IS harsh and one of the people who is about to suffer the most is you. Your partner will be on a similar journey, but it won’t be yours. He didn’t grow this child inside him and eat and drink only the things that would nourish and protect your developing love. He wasn’t tied to this tiny being by blood like you were. He didn’t produce the milk that was made just for your child, whether they took it or not. He loves them without question, but not in the same way as you do. Not in the way where your belly contracts when they feel pain or are hurting; not in the way where you can sense every single change in your child before even they do.

One day you’ll just know in your core that something is badly wrong. You’ll do what you know is right and go to your GP with your child and tell them that they don’t seem to want to eat much and they are withdrawn. They are obsessing about veganuary, the gym or walking for miles and miles each day, or they seem to move about a lot during the night. You can hear creaking floorboards way past midnight and your child is tired and low in mood. Your GP will probably tell you that it is a phase and that you shouldn’t worry. They’ll likely tell you that it isn’t anything that needs a referral and in any case, the waiting lists are so long it’s unlikely your child would ever get seen. So you’ll go home. You might have shared your worries with a friend or partner and they’ll declare triumphantly that they knew there was nothing wrong. But YOU’LL know. You’ll just know. You’ll keep quiet because you don’t want to be seen as dramatic or, God forbid, someone thinks you are imagining it, but it’s there, a tiny, invisible wound inside you.

It might take a week for you to call that GP back and ask for another appointment. They’ll book you in to see a nurse because the doctor has given your child the all clear, but they’ll play along and take your child’s blood pressure and do an ECG.

‘Her blood pressure is extremely low, and her ECG shows that her heart isn’t functioning as it should be. Why didn’t you bring her in before? When did she last eat? Drink? She’s refusing? Why didn’t you bring her in before? She needs an urgent referral to the eating disorder team, I just don’t understand why you DIDN’T BRING HER IN BEFORE?’.

And so you're on the ride. It's scary. You’ll have appointments in clinics where children aren’t allowed to go home with their parents. You’ll have appointments where you are told that the next step is sectioning and nasogastric tubes and liquid food pumped directly into your child’s stomach. Every appointment you go to you’ll see changes. Maybe they are angry, maybe they don’t want to see other poorly, starving kids because then that must be what THEY look like? You’ll walk out of the clinics crying, carrying crates of bottled food and promising the doctors that you’ll get some into your child. Hoping that your child will let you by the time you get her home back into bed where she needs to rest.

They may not be able to go to school, so work might be sent home for them, but they can’t do it because they can’t hold their head up long enough and anyway, their fingers hurt too much to write for long. Friends will fall by the wayside; hers and yours. You can’t leave her because no one knows her like you do, not even your husband. He gets too emotional about it, he can barely look at her without crying, but you are starting to ignore the expanding gaps between her thighs and the spaces under her arms. Her cheek bones don’t scream at you like they do at her dad and anyway, if you leave her side she won’t even drink those calories and then there’s nothing left.

You’re starting to not see these things because your mind is trying to protect you. Every single appointment, tear, outburst, argument, shopping trip and car journey is a blur but every single one of these has added to that invisible wound on the inside that no one can see or feel, not even you.

All the pointless seeming tasks your child’s nurses and psychiatrists set will slowly, slowly start to make an impact. Perhaps her passion for the things and people she loves will wake up a part of her that wants to get better, and you’ll be there, protecting her, the whole time. You won’t need to call an ambulance for longer periods of time and your appointments at a clinic which are over an hour’s round trip will go down from daily to twice a week, then once a week. You’ll celebrate every single gain, as will family and the friends that you have left and you’ll start to feel positive that maybe life will go back to how it was before after all.

Then your mum might get ill. Your heart will break into a million pieces but you’ll hold it all in because you don’t want this to impact your anorexic child any more than it has to. You’ll rely on your family to love your mum well because you can’t take your child to see her, it would be too painful, and you can’t leave her anyway. Your mum goes through brutal treatment and you aren’t there for her because you can’t be, because your child needs you.

You’ll be given permission for her to go back to school so that she can sit a couple of GCSEs and she can start gentle sport again, which she loves. You’ll control everything and watch every single move she makes. You’ll be counting calories without her knowing and sneaking extra in because you are used to being a calorie sleuth and some habits are hard to drop. Life will start to resemble normality and you’ll be so glad when it does. Until your dad suddenly dies. You will go into overdrive, ignoring your pain and focussing on your child and her siblings and the family members that need you to be strong.

And you do have other children. Whilst you’ve been focussed on their sick sibling they have been changing too, but you didn’t notice because you couldn’t notice.

You're trying so hard to keep your daughter alive that her brothers have gone without their mum for months. So you need to start spreading yourself out, which is difficult, because you still need to know what your recovering child is eating and drinking and doing at all times. Your guilt will allow you an extra hour or two awake with your boys and you’ll silence the voice in your head that is whispering that there isn’t much of you left. That you are tired and need a rest. That you aren’t the person you were before all of this started and you want her back.

Your anorexic child isn’t anorexic anymore and you couldn’t be more relieved. She is off in the world. New friends, a new life and an interest in everything. She doesn’t need you anymore; she’s got new, exciting people to be with. Not you though. You haven’t made new friends. You really haven’t got the energy for any of that. In fact, you’ve let most of your old friends go, and when they’ve tried to get back in you’ve shut the door in their face. Your mum is alive but your dad is gone, and the guilt that you carry of not being there for them is eating at you. You are happy that your recovered child is off in the world but you don’t trust her; you never will. And a tiny part of you resents her for this change. It’s not her fault, of course it isn’t, but where did YOUR life go?

Meanwhile, enough time has passed for you to have quiet. Perhaps you’ll have started a new job that you love because you don’t need to be at home anymore, but even with the busyness that brings you’ll have time on your hands. You’ll have time to think and feel and that wound inside you will start to scream. It will bleed and cry and sting and no one will see it and no one will feel it but you. The world has moved on but you are left in a whole world of pain that no one could ever possibly understand. It is PTST for every single second of this living nightmare that you and your child have survived, that now no one remembers but you, not even her.

Mums, we need each other. We promised our children that they would get better, and they did. Now I am promising myself that I will. And I promise you, you will too.

-Contributed by Sophie

If you've been affected by any of the issues raised in this story, or are concerned for yourself or a loved one, you can find support and guidance on the help pages of our website.