I’ve been told my eating disorder isn’t bad enough yet. But I’m not giving up.

23 May, 2020

Two years ago, I sat across from a doctor I’d never met before and explained I was having “food troubles”. Food troubles that prompted her to say:

“We’d characterise this as an eating disorder.”

The floor fell from the room and I nodded, half-listening, when she suggested I liaise with Healthy Minds, part of my local Mental Health authorities, to arrange for some help.

She referred me. The letter came. I did nothing.

Eating disorders do not disappear

For some time, after ignoring this letter, I managed. In fact, I would go as far to say I improved. My attitude towards food became healthier, to the point where having a takeaway with my partner was no longer the anxious affair it used to be. I gained a little weight during this time, which also didn’t bother me.

By last summer, I was nearly a stone (fourteen pounds) heavier than I had been at my lowest – but still eight stone lighter than my heaviest. I had lost this weight from “dieting” previously, which seemed to justify such an extreme weight loss to most people I explained this to. Little did I realise, this diet was the start of a problem; a problem that, I now know, will not simply go away with time.

Unexpected trauma = trigger

Something terrible and unexpected happened at the start of this year. It wasn’t something I wasn’t prepared for, and it’s something that I’ll likely deal with, on and off, for many years to come.

When trauma arrived, my eating disorder returned; it was only then that I realised it had never really gone away.

For the last four months I have been having “food troubles” again – worse than I’ve ever had them before. I thought – as I had done previously – that persistence might help me to manage this problem if I only tried hard enough. A few weeks in, though, with my weight starting to drop (only slightly, but drop all the same), I thought it was time I asked for help.

“Are you sure it’s an eating disorder?”

I self-referred to Healthy Minds, which felt like a mighty step in itself. They liaised with me, via letter, for a telephone conversation and a couple of weeks later a very pleasant professional called to discuss my problems with me.

“So, you’re scared of eating?”

“Yas.”

“And of gaining weight?”

“Yas.”

“I think we’re probably dealing with a food phobia here…”

I’m paraphrasing, but you get the idea. In one swift conversation, the eating disorder that I’d been hiding from friends and family alike simply disappeared. They went on to tell me there was a waiting list for face-to-face counselling in the area, but how would I feel about online alternatives? I readily agreed to be signed up for an online system of self-CBT where a therapist would check in with me now and then.

Another two weeks passed when I received my follow-up letter, saying I’d receive another phone call soon, to be given more information about the programme I’d opted for – for the food phobia I had / didn’t have.

“It sounds more like an eating disorder…”

One conversation later with a different member of a different team and, just like that, I had an eating disorder again. The different, second professional explained that Healthy Minds are so busy they sometimes outsource their calls to external organisations; it was someone from one of these other organisations who called me originally (to remove my eating disorder), but this new guy had other ideas.

“There is actually an eating disorder team for this.”

“Okay.”

“And, I’d like to refer you to them to see if they’ll take your case…”

I was being forwarded to another person, for another conversation. But my calorie intake was dropping, as was my weight, so I didn’t feel I should back out of the process. I said, “thank you, that would be great,” and finished the phone call in tears with a deep sense of gratitude for what I was being offered.

“Very strict requirements…”

It took another week and a half for any word back on whether the eating disorder team would take my case. The second professional I’d talked to called me one late afternoon and, as I’d missed his call, left a voicemail to explain he had news about my referral. Could I call him back?

I could. I did. Four days in a row, before finally getting through.

“I talked with my manager and my team…” he said, leaving me checking my phone screen to make sure I hadn’t called an energy supplier rather than a mental health treatment office. “The thing is, the eating disorder team have strict entry requirements, and at the moment they’re only accepting cases where people are binging or purging. It doesn’t look like you regularly do either?”

“No,” I replied. “I don’t.”

“So, we think the best thing is for us to redirect you to BEAT, which is a very good charity, to see whether they can offer some help. How does that sound?”

“Okay.”

“Okay, and, because of that, we’ll be discharging you from Healthy Minds…”

Treatment via GP

I spoke to a representative at BEAT who advised me to discuss the issue with my GP, as they might be able to refer me elsewhere.

When I relayed my symptoms (again), to my GP she said, “I can see why the ED team wouldn’t take the case. You don’t quite meet the threshold.”

Cast out by other treatment services up to this point, I agreed to a prescription of tablets to help with anxiety and, as my GP phrased it, “take very gentle steps towards increasing my calories.”

She said she would call me back next week to see how things were going.

If only I could take the tablets; feel less anxious; eat more food. Then everything would work out well. “Baby steps,” she stressed, “we just need to make baby steps…”

Yet, somehow, as the days have rolled on since that appointment, the baby steps have felt more like giant strides.

So, reader, you might guess at how things are going.

The National Health Service

I feel like now is the right time for a disclaimer. Every single person working in any branch of the NHS right now is a champion. They are strained and frayed and yet they plough on, through COVID-19 and everything that godforsaken virus has brought with it. The health services in the country are understandably suffering under these new pressures placed on them and I don’t mean for this to sound critical of the NHS, at all.

What I would like to criticise is the tone, treatment, and approach that the people I’ve spoken to have taken towards my current situation.

There has been a resounding tone of, “It’s not bad enough for treatment.” This has been reaffirmed further by comments made by the above GP – “Well, your BMI is fine at that weight.” – who seemed to suggest that my nearly-two stone weight loss over the last couple of months is fine, because it keeps me in a ‘normal’ bracket for a woman of my stature, age and activity level.

If you think you have an eating disorder…

Beautiful reader, I write this as a tiny warning but a huge plea. I wouldn’t discourage anyone not to seek treatment for an eating disorder – the opposite, in fact. I would encourage you to. However, before I went looking for treatment, I believe I would have appreciated a warning regarding how convoluted the process might be, with no guaranteed straight, short lines from ‘problem’ to ‘solution’.

While my GP surely has the best of intentions, asking someone with an eating disorder to try eating a little more is a request that falls on flat ears. Eat more and my eating disorder will go away? Gee, I wish I’d thought of that…

All of this said, regardless of where you are in the eating disorder timeline, you deserve help.

I don’t know what my next steps are; I don’t know that taking tablets is for me, but I do know that since my GP asking me to eat more, there have been days when I’ve eaten a little less.

The other thing I know, though, is that there are next steps available beyond this. There are other doctors at my GP practice, ones who might specialise in something closer to what I’m experiencing. There are self-referral services that, while closed at the minute, will hopefully open again soon. There are counselling services – both online and in person – and there are support groups (ones I use on the most difficult of days already) where solidarity and openness can be found, not just from people who are also suffering, but from those who have suffered all the way through to recovery. It might be a fight to get there; but I believe it’s a fight worth taking on – because my body needs and deserves food, and so does yours.