I like to think I’m a patient person. And I really hate the idea of being a difficult patient. But, in all of that, let’s just remember that I am a person. I was a person before I was a patient, and one day, I hope to be just a person once more.

I have been very patient. I’ve waited. I’ve given it time. I’ve waited some more. I’ve been a name in a system. And I’ve been a name trying to get into a system. I’ve been a date of birth in a spread-sheet. I’ve been a list of behaviours and a mobile number. I’ve been a weight. A weight waiting. I’ve waited.

Eating Disorders Awareness Week (26 February-4 March 2018) is asking the question: “Why wait?” This is two fold. Evidence suggests that, “on average, 149 weeks pass before those experiencing eating disorder symptoms seek help. That’s almost three years, 37 months or 1,043 days” (BEAT). This makes the gap between symptoms and recognition, without doubt, one of the largest, and suggests a need to increase symptom-awareness. Furthermore, BEAT states that “[e]ating disorder sufferers face an average wait of three and a half years for specialist treatment”. Again, would this happen with other life-threatening illnesses? More than three years, in the grips of a life-limiting, life-claiming illness is a dangerously long time. I’ve said it before, and I’ll say it again: it’s as though professionals/the health system/powers-that-be are playing my life like a game. That might sound somewhat ironic from someone controlled by anorexia, and treading various precarious lines, but that is exactly why I need help. This is exactly why this wait is wrong. People's lives are in question.

The first “professional” I ever saw was a school counsellor. She repeatedly told me how I was “really very lucky, because at least I didn’t have anorexia”. Admittedly, at the time, I was yet to be diagnosed with said illness, and was seeing her for other reasons. However, I was eating disordered, which she didn't know, because she's never actually asked me anything about my eating habits. Honestly, I’m not entirely sure how she made such an interesting observation regarding how lucky I was. (There’s no luck to it.) Not only was this a missed opportunity, it also dismissed all other issues I was experiencing and fed me the belief that nothing was wrong with me. Of course, I’m not blaming this woman, she was a very small piece of a very big and complicated puzzle. I’m simply highlighting the early days of a very long wait, and a discourse that contributed to me continually doubting my symptoms.

In the six years since that first appointment I have seen many different professionals. I’ve also stood and watched helplessly as many friends have been subject to a similar post-code lottery waiting game. I have waited and consequently, I have, quite literally, lost years of my life. I’m still waiting. I currently sit, attached to my phone, as I wait for my fate to be decided and fed-back to me (no pun intended) once more.

Having accessed specialist eating disorder services for a period of time, I know they make a massive difference. This is where lives are saved. This is where the healing starts. This is where the living reemerges. Whilst under their care, I finally began to make progress, both physically and mentally, however, this too was cut short, namely due to “complexity” and my move back to university. I slipped through the net once more. Eating disorders need specialist care. With specialist care progress IS possible.

Repeatedly, much to the disapproval of my “must please everyone and be the perfect person” tendencies, community mental health teams are unsure quite what to do with me. I’m functioning (debatable, but let’s just say I am because I’m doing a degree…a second degree…), well-dressed, well-spoken, smiley, polite, cooperative… I am not your standard “sick” person. And whilst you’d hope that mental health services would appreciate this, and see through it, often, generic mental health teams are flummoxed by my all-consuming issues, which lie so carefully hidden in essays, brushed hair and coherence. Anorexia fools them all too well, and I’m left small and side-lined once more.

Perhaps my favourite thing that a professional has ever said to me (just topping “you smile too much,” and “you need to take off your shoes and walk in the grass”) came about two years ago, as I approached the end of my undergraduate degree: “Yasmin, I think the best thing you can do is to do some research into where in the country has the best eating disorder treatment, and then move there.”

*smiles politely and thanks for his excellent advice*

I’m not sure he quite realised how all-consumed I was. I’m not sure he realised how I was on my knees and begging for help. I’m not sure he realised how much more time I would lose in the months I still had under his care, in his catchment area. It’s been said many times, but this simply would not happen in other areas of the health service. Fact. A patient – because yes, I am, still, unwell, a person – because this is my whole life here, with a broken bone, a long-standing health condition, an illness that threatens to take their life, would not be told to a) play detective and seek out the illusive service that might just be able to help them, and b) would not be expected to, quite literally, uproot their already shaky life, move hundreds of miles from friends and family (who are fundamental to recovery and LIFE – I owe you all the whole world for keeping me smiling when pain and suffering feels endless) and rebuild their existence?! It just wouldn’t happen. It doesn’t happen.

At some of my “most unwell” times, when I have been most desperate, it has been largely due to utter hopelessness. I have spent years of my life waiting. Does waiting ever stop? Or is waiting just my existence now? 2018 hasn’t exactly gotten off to the start I had hoped; I’ve spent 8 solid weeks waiting, and been really quite unwell. Before that, on moving back to university in September 2017, and despite my home team sending letters and communicating with local services in June 2017, I waited until the end of February 2018 for an appointment with the local eating disorders team. The time between September and February? Well, I’ve been functioning…academically. I’ve also been chasing referrals and chasing my marbles….I wish I could do this on my own. More than anything, I wish I could recover without anyone’s help. I’m stubborn and determined and perfectionistic and eager to please, but I am risking the wait and admitting that I need help. I don’t think people have any idea how hard that is…how terrifying it is to quite literally put your life on the line, time and time again…and be put on hold. I’m sorry, but this is my life. My whole entire existence. I can’t put it on hold and just put anorexia to one side and go about my life. That. Is. The. Whole. Bloody. Point.

 

This is my life. And I got ill. And it really sucks. And I’ve lost so much time. And I’m still losing. (No before/after/hospital picture will demonstrate anywhere near the reality of living with anorexia. No weight loss will ever capture the reality of how much time…how much LIFE and LIVING…I have lost.) I’m still waiting. And I have no choice but to wait, because this is my life.

With specialist care, when I was in a better place, when I had the energy to fight, the motivation to imagine a life without anorexia, and the hope to believe it were possible, recovery was not impossible. It was tough, and it was a process, a work in progress,  but it was not impossible. Now, I’m waiting. Again. Patiently. Because I’m a patient. But I’m also a person. And I’m still, still waiting.