Nuala's Experience

CW: anorexia nervosa, mention of BMI and calories (no numbers)

In my first year as a student at Oxford University, I had a great time discovering the joys of independence. This included (but was not limited to) getting ice cream at midnight with friends, eating an entire packet of Bourbons under the justification that I needed fuel to write my essay, and enjoying many a carb overload by eating in halls for most of my meals. Unsurprisingly, given that I’d pretty much stopped doing exercise except power walking when late to lectures, and since I didn’t have a pair of scales at uni, once I arrived home I discovered that I’d put on a few kilos during the year. I was surprised (though in hindsight I shouldn’t have been), and quite concerned.

I’d already learned how to track calories while at school, and now I started doing it more regularly, alongside going to the gym every other day. Quickly, I shed most of the weight I’d put on. I decided to try to take up running and successfully did so at the start of my second year, simultaneously becoming vegetarian on the grounds that it was better for me and the planet. In reality, I’d realised that often vegetarian food, by virtue of it often being mostly or entirely vegetables, had fewer calories than meat.

In December that year I went to the college nurse, then my Oxford GP, because I’d had no periods for several months. Both put it down to the stress of my first year exams coupled with the new exercise regime and becoming vegetarian. Neither made any suggestion I might have an eating disorder, but the GP recommended I try and gain some weight. I was excited by this at first – a medical excuse to eat whatever I wanted! But it wasn’t quite that easy. Though I did regain a little weight at Christmas, I quickly lost it again, and my weight remained mostly steady with occasional decreases.

That continued for the rest of my time at uni – I continued to exercise frequently and eat less, tracking my calories pretty consistently. During my finals – at which point I hit my new “goal weight” of just on the border between a “healthy” BMI and “underweight” – I did rather wonder why I was hungry every night and waking up ravenous, but I just put it down to stress.

After a 6 month break back with my parents post-graduation, during which I began to ignore my hunger cues more and more, my obsessive behaviours around food and my complaints about hunger led my mum (who tells me she had been worried for a while) to tell me to see my home GP not just about my lack of periods and my hair loss, but also about my anxiety over food. I did so and the GP’s attention was noticeably caught when I mentioned that I felt guilty every time I was hungry and/or ate. She referred me to Vincent Square, the eating disorder clinic in London, for an initial assessment.

6 days before my assessment, I received an offer for a job in Oxford. At Vincent Square, having told the assessing therapist all about my food anxiety and as she was about to exit the room to print me some initial booklets on challenging my anxieties and behaviours, she asked me if I had any questions. I just had one. “Do you think I have an eating disorder?” She looked at me in surprise, clearly quickly realising that I had no idea my attitude towards food and weight wasn’t healthy. “Yes”, she replied. She began to explain the help Vincent Square could offer me, including therapy, at which point I told her I would be moving to Oxford for the new job. She told me she’d try to get me referred to Cotswold House, the eating disorder clinic, though she’d have to check if they had a BMI restriction as some clinics couldn’t help people above a certain weight, and at that point I had a “normal” BMI.

On moving to Oxford, I rang Cotswold House but they told me I needed to re-register with the GP in Oxford, which I did. A few weeks later, the GP at my first appointment told me he couldn’t refer me to Cotswold House since they had a BMI limit, but he gave me a leaflet for TalkingSpace and told me I could self-refer there for CBT (Cognitive Behavioural Therapy). I then found myself in a labyrinth, with all the services saying that I should see someone else. I rang TalkingSpace and they said they couldn’t help me since I was “already receiving mental health treatment in Oxford” – which I wasn’t. I thought maybe I was still registered with the university counselling service, who I’d had a couple of sessions with in my second year of uni. I went to a second doctor’s appointment, with a different GP. I explained my situation and he said, practically looking me up and down as he did so, “Well, your body shape is fine, but it would be nice for you to get some help with your mental anxiety about it.” I knew that it was a slip of the tongue and he meant my BMI was “fine”, but the words still stuck with me, cementing my conviction that I needed to be “properly” underweight in order to be taken seriously and receive real help.

A couple of weeks later, in desperation, I spent the best part of an hour ringing various services. TalkingSpace said they didn’t help with eating disorders but that the mental health services they had me as registered with was actually Cotswold House, who I’d heard nothing from. They said I should ask Cotswold House if I was registered with them but also if they genuinely did have a BMI limit. On ringing Cotswold House, the receptionist there told me they didn’t have any sort of BMI limit, they offered help to people of any BMI, but I still needed to get referred to them from my GP as they didn’t have me registered with them. Communication had clearly been lost somewhere between Vincent Square and Cotswold House. So I went back to the GPs for the third time and finally got the referral to Cotswold House.

7 weeks after that, I had my initial assessment with Cotswold House. I had rung them in tears a few weeks previously to ask if I could have it sooner, but they were only able to move it up by about a week. The lovely, motherly woman who assessed me promptly diagnosed me with Anorexia Nervosa, given how much weight I’d lost and how little I was now eating. She said she’d fight to get me put on the priority waiting list for CBT-e, so that instead of a c. 6 month wait (only that short because the clinic was doing better than it had been previously, when some patients had had to wait 1.5-2 years to be seen), I would only have to wait 6-8 weeks.

However, I discovered that summer, about 5 weeks into the waiting period, that it would not in fact be that short, partly since the therapist I was potentially going to see was going on holiday. Over the long wait of the next few months, I clung to whatever snippets of help I could find, making use of the BEAT helpline multiple times to cry down the phone at their wonderful volunteers. 18 weeks after my initial assessment, I finally started CBT-e with a therapist. He was actually very helpful, particularly because I was really desperate to get better so tried hard to follow his advice. Cotswold House also gave me 40 sessions instead of the standard 20, so that I had more time to restore my weight and mentally recover.

When I had around 15 sessions left with my therapist, he told me he’d got a new job and would be leaving Cotswold House before my CBT course was over, but he would try to find someone to take over. There was a period of uncertainty during which I didn’t know whether I’d get another therapist or be forced to finish CBT before I’d anticipated doing so, but thankfully the clinic found another therapist for me, who I met with twice in person before being forced onto Zoom by Covid.

Very near the end of CBT, having only recently restored weight to the goal my first therapist had set me at the start, my second therapist informed me that she too would be leaving Cotswold House, though only once my therapy had finished. She said she’d try to get someone to check in with me six months after we finished, but the clinic was really struggling, so she couldn’t guarantee any support. I don’t know whether I will get that check-in, but I’m not holding my breath.

When an acquaintance of mine spiralled deep into a severe relapse of her anorexia, at around the same time as my CBT ended, she really struggled to obtain any support from Cotswold House. They didn’t have enough resources to help anyone other than their inpatients, and she wasn’t one. She did get a Zoom call every other week with a dietician there, but ended up switching to the clinic she’d been with the first time she became an inpatient.

Looking back over the past couple of years, it’s starkly obvious to me now how lucky I was to get the amount of help I did, when I did. It seems to have been a combination of fortunate timing and a lot of pushing by me to obtain help, against an appalling lack of information and even misinformation which the various services I interacted with seemed to have – and give me – about eating disorders. Cotswold House, once I eventually started therapy with them, were very helpful – I am so grateful to all the staff I interacted with there, who did genuinely seem to care about my wellbeing. However, it was an uphill struggle to obtain that therapy; one which I’m not sure many people suffering with an eating disorder would have the energy or motivation to see through to its end.

I really hope that the situation changes, and fast. I’ve seen too many loved ones suffer as a result of developing an eating disorder themselves, or having to support someone going through one.

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