Caring with an Eating Disorder
When the pandemic hit in 2020, my sister unexpectedly moved 200 miles down south. At 23, I became solely responsible for caring for my father, who was housebound with an undiagnosed neurological disease. The isolation, caring, a part-time job, alongside completing my final year of university, was the perfect storm for my disordered eating to develop into anorexia nervosa.
Anorexia appeared the perfect coping mechanism for this scenario – it numbed the extreme stress and difficult emotions that came with my situation. It allowed me to continue to appear the competent, confident, high-achieving student and gave me a sense of achievement and euphoria because, in the midst of all the stress, I was succeeding because I was losing weight.
Of course, it all came crashing down eventually – I started to become physically compromised and the malnourishment began to make my daily life and responsibilities incredibly difficult. I was exhausted. The rituals and rules that had given me a sense of safety turned into a cage I was trapped in. The rollercoaster wasn’t fun anymore – but I couldn’t get off. When my Dad was finally diagnosed with a terminal, progressive illness a year later, I was signed off work. I then had to clash with my university about whether I was well enough to finish my degree.
I doubt my situation is an unusual one. I’m of the estimated 10.6 million carers in the UK in total (Carers UK). Providing care impacts many aspects of a carer’s life, particularly emotional well-being, health and life balance (Carers Census Scotland, 2021). Caring, in my case, manifested into mental health difficulties, and I can imagine it has impacted many others in the same way.
My dad has always been my rock. He is selfless and kind, and faces his illness with admirable strength. Caring for him is a privilege, and I would not ever give it up. But I cannot deny that his disease and being his carer are intrinsically linked to my eating disorder. When my Dad’s speech deteriorates further or his mobility gets worse, when difficult things like a Will need to be written, or there’s an unrelenting stream of appointments and phone calls to make, I find myself struggling more, the ED chatter gets louder, things are skipped and portions are skimped.
I chose recovery in November 2021. My journey has been full of ups and downs and is far from over. I’d like to share some of the things I’ve found helpful in managing, caring and recovering.
1. Let people know you have an ED
Eating disorders thrive in secrecy, and mine was no different. I held back from telling my father’s care team in the initial six months after his diagnosis – partly out of shame, partly out of denial, and entirely from worry they’d think I was incapable of caring for Dad.
When I made a medication error for my Dad, that spooked me into telling my Dad’s specialist nurse about my condition and kickstarting recovery. I was terrified I was going to be met with judgement. In reality, I was met with huge amounts of compassion and understanding. Additional support was provided to me by a third-sector charity and the nurse pushed me to shift responsibilities, alleviating the pressure on myself to focus on getting better. I thought people were only there to support my Dad, but actually, they were there to support me to support my Dad as well. People can’t always tell what you’re going through, not until they know.
Letting people know you care can also make a huge difference. It took me a while to understand I actually was a carer, but when I told my university, they provided me with a lot of flexibility with my deadlines to work around my Dad’s appointments. My tutor was incredible at helping me manage everything. She went above and beyond to get adjustments, that allowed me to finish my final year. If she had not known I was a carer, I don’t know if I would have completed my degree.
2. Let people help
Caring is often a full-time job, and so is recovery! Make things as easy as possible, you already have enough going on
My anorexia thrives on self-reliance and being independent, so at first it was really difficult to let people support me with both caring and recovery. Letting other people take tasks off to help my Dad while I focussed on recovery was so important in those early months, where you really need to prioritise rest and getting better. I often needed other people to tell me they’d sort things for me as I couldn’t do it, my head was too full!
Some examples of this might be letting friends, family or professionals give a hand with things where possible – from laundry and cleaning to appointments, or visiting others/letting others cook for you, so it’s not another thing on the to-do list.
Most local councils have a charity for carers which can support you. This can be found here or your GP can signpost you: https://carers.org/help-and-info/carer-services-near-you.
3. Set boundaries
Setting boundaries can be a struggle... I’m a self-confessed people-pleaser! It’s easy to always say ‘okay’ as a carer, and this can lead to you doing things you’re uncomfortable doing for the person you look after, or not being able to prioritise your recovery (e.g. missing meals or snacks, not having time to do the activities that support your recover). This increases the risk of you becoming overwhelmed or relapsing into ED behaviours as a coping mechanism.
I’ve been working on saying ‘no’ to things for a while and there are some lines I’ve firmly drawn in relation to what care I will provide my Dad, in order to sustain my own health. I don’t cook for my Dad because I find it too difficult and it would restrict my food choices. Nurses come in regularly to manage aspects of my Dad’s physical health needs, which allows me the flexibility to be out of the house for a while to manage difficult emotions, practice self-care and take breaks.
The boundaries benefit both my Dads and I, as we maintain a better relationship. I’m less anxious and stressed, and we remain father and daughter. It’s also a safety net that means when I’m struggling, the responsibility to look after my Dad isn’t solely on me.
Setting boundaries at work, like not staying late or taking on additional tasks, is equally as important if you work. I still struggle with this but my manager and supervisor are pretty good at supporting me in this area.
4. Prioritise, and drop perfectionism
How important is this task? Does it need to be done today? Can it wait until I have a little more time or headspace?
For me, it feels like there’s a never-ending list of things to do. My perfectionism thrives on this, making me sweat all the small stuff, and before I know it, I’m stressed out and overwhelmed. I’ve had to learn to let go of things like the house being immaculate, dishes being done, and ensuring no recycling is in sight, for the sake of my sanity. So long as my Dad is fed, comfortable and the house is clean enough, that’s what matters.
When that feeling of “I have so much to do” builds up – write the things out, prioritise them, and break them into smaller chunks. There are some things that have been on my to-do list for nine months because they aren’t that important. Shockingly to me, the world has not burned to the ground as a result.
5. Practice Self Care
Self-care and self-compassion are hard to practice in normal life, and they're even harder when you have an eating disorder or you care for someone. But it is important to maintain your well-being and prevent carer or recovery burnout. When I’m burnt out, I can’t do anything at all, and I’m no use to anyone!
Go to the cinema, take a gentle walk in the sunshine, spend a weekend away with a friend, or read a book or journal in a coffee shop. It is nothing to feel guilty about. My relationship with my dad is best when there’s time for fun and breaks. Make sure you specifically schedule these into your week wherever you can, and let others help make this happen.
Caring and managing recovering from an eating disorder is a balancing act and often feels like you’re juggling a lot of plates, for yourself or someone else. It is so easy for extra plates to be added and for things to become overwhelming. Recovery makes me a better carer, and a happier daughter and lets me live life whilst caring to the fullest.
Carers UK - https://www.carersuk.org/policy-and-research/key-facts-and-figures/
Carers Census Scotland 2021 - https://www.gov.scot/binaries/content/documents/govscot/publications/statistics/2021/12/carers-census-scotland-2019-20-2020-21/documents/carers-census-scotland-2019-20-2020-21/carers-census-scotland-2019-20-2020-21/govscot%3Adocument/carers-census-scotland-2019-20-2020-21.pdf