A memory sprung to mind the other day thinking back to when I was first involved in eating disorder services. I was given a questionnaire to fill out and one of the questions on it was, “Does your eating disorder make you feel you can have your cake and eat it too?” And I just think now how inappropriate and insensitive that question was. There was surely a better way to word it, it almost seems as though someone was having a joke at patients expense.
This week my psychologist and I spoke about if I were to get well and what it would look like and my fears around it and to be totally honest I can’t remember what it’s like to be well. It has been over a decade of illness and nearly two years since I came into hospital after a handful of shorter admissions.
If I really try to imagine it I imagine a ‘well’ life to be quite good. I wouldn’t be in hospital and I’d be at home again with my family and my dog. I’d bake and cook meals and snacks for myself, I have hoards of recipes saved for when I get better and I can’t wait to try them out. I would enjoy eating, an idea that seems incredibly alien to me right now. I would go to ballet and help out with the younger classes. I would go to the beach with my friends and laugh the night away at karaoke. I’d watch telly with my family and go to the cinema with my dad. I’d play on the 2p machines at Barry Island with my mum. I would have my freedom back and I could go on walks alone, just my iPad and me. I’d experience new things, new foods, new places. I would live instead of exist. I would be able to be an adult although that absolutely terrifies me.
Everything about getting well is full of uncertainty and it completely overwhelms me. I’m scared to eat again, it’s been nearly a year since food passed my lips and it terrifies me to think of the day I have to put it in my mouth again. I don’t even know how my stomach would physically handle solid food after so long. I’m scared of the taste and texture and ‘greasy’ feeling food gives me. I’m scared to gain weight, to be fatter than I am now. I’m scared that none of my clothes would fit me. I’m scared that being bigger would make me hate myself even more than I already do. I’m scared of the responsibilities that come with life, I’ve got a lot to learn, and I’m scared of the day another of my loved ones dies, it feels unbearable to think about my mother and father dying. I don’t even think I could handle my dog dying. I need to reintegrate back into society and that scares me, even the thought of standing in a supermarket aisle terrifies me at the moment because I am so used to these four walls. I also worry that I wouldn’t have anything to blog about. My whole social media outlet is centered by mental illness and if I were to get well then where would that leave me? I’m not sure that I know who I am without all of this and the thought of being an adult terrifies me. I might be in my twenties but I don’t feel ready for that yet. What would I do for a career, I mean I don’t even have A levels, would I have to go back and study? A recovered future is full of questions. If I were to get well then I wouldn’t have a mental health team around me, these people I have known for years will not be in my life anymore and that really scares me.
I want a normal life, a recovered life but I’m not sure that it’s possible and that makes me feel a bit torn when it comes to recovery. Part of me wants to really give it a shot but the other part wants to give up and die and I can’t say which side is winning at the moment although it is probably the latter.
The GP plays such a vital role when it comes to eating disorders. They are the key holders to all other services and provide referrals to eating disorder services and community mental health teams as well as referrals for the physical effects of eating disorders such as bone density scans.
The GP is the foundation upon which the rest of treatment is built. They often monitor the patient’s weight and do regular blood tests. They are often the first port of call for the sufferer. This is why it is so important that GPS have training and understanding in eating disorders.
I had been ill for years but when I went to the GP to ask for help I was terrified. It shocked me to see the words ‘anorexia nervosa’ on my notes and I so desperately needed help. Despite the low weight and terrible mental state I was told to come back in a month. A month is a long time for someone so desperate and poorly. I couldn’t see how I could get through another month and out of sheer fear and desperation I took an overdose which hospitalised me and resulted in a CAMHS referral and a referral to the eating disorder service.
Usually GPs continue to support the patient whilst they are under the care of mental health services monitoring both weight and bloods and it is important that GPs know how to support and talk to the patient in a way that is supportive and full of understanding.
I was amazed to receive an email congratulating me on coming in the top 60 mental health blogs on the planet. Mental illness Talk came in at number 41.
The link can be found here
Something I find incredibly frustrating is when I am speaking to mental health professionals and am told “it is your choice.”
I’ll give an example of this. I saw my dietitian earlier in the week and we were discussing my intake as it hasn’t been substantial lately. He suggested I take a snack out with me and eat out the house and I said “I can’t do that” to which he said “Well you can but you’re choosing not to” and it made me so angry. It isn’t as simple as telling me that it is a choice when I haven’t eaten outside my home or around other people that aren’t my immediate family in years. I am also struggling with food and my ‘safe’ foods aren’t suitable for taking ‘on the go’. It is far more complex than telling me it’s my choice, there are many rules, fears and anxiety along with the rigidness that goes hand in hand with my illness. Would it not be better to listen to me and understand why I feel I cannot do X than to simply tell me it’s a choice.
This hasn’t just happened to me in regards to my eating disorder, I have been told it’s my choice when I have spoken about plans to end my life or the affect depression was having on me. Just because someone has the physical capacity to do something, it doesn’t mean that they can do it. Mental illness isn’t a choice and is valid and I often find that being told aspects of my illnesses are choice makes me feel pathetic and guilty.
To call parts of mental illness is a choice is to simplify them and this is not helpful for the patient in my experience. I feel it would be better if we talked about the barriers and the reasons why I feel I cannot do a certain thing and then discussed the solutions rather than to simply end the conversation with the ‘choice’ card.