The Reality of Anorexia Nervosa: There is no magic wand

Mark Austin has admitted to The Guardian that he told his daughter, who was suffering from Anorexia Nervosa, to “starve yourself to death.”

Undoubtedly it was not an easy thing to admit to, but the reality is that when you are a parent with a child who is quite literally starving themselves to death, you get desperate. I can recite the desperation of my parents when I was destroying myself. What do you do when your 15 year old daughter is laid up in bed, and has not eaten or drunk for the last week? We all say things in anger, but more than it being in anger, it is pure desperation to get a reaction, to change the situation. It is hoping that she will get up and eat.

The problem is, she won’t.

People close to me went to some shockingly desperate extremes that make me want to reach out to Mark Austin and say “it’s ok, really it is ok”. Some of the extremes people around me went to were not ok.

This admission from Mark is to make people see that eating disorders are a serious illness that cannot be ignored. People suffering with eating disorders are not selfish, they are not attention seeking, and neither are they vain. In order to help someone get better it is important, vital in fact, that we realise that this is a serious, life-threatening condition, that is going to require much more than anger, threats, or “just eat” comments to treat. It is a mental illness that requires treatment. It is a mental illness that carries the highest mortality rate of all psychiatric disorders, a fact, that even today still shocks and terrifies me.

There is no easy fix to an eating disorder. There was nothing my parents could do, not really. They could love me unconditionally, they could get me the help I needed, but this was something that was going to take a lot of time, and professional help.

At 15, I spent a year on a child and adolescent psychiatric ward being fed, some time of which was spent sectioned under the Mental Health Act because I could not see that I was ill. Life consisted of breakfast, snack, lunch, snack, tea, supper. I was fed all of the foods we are told not to eat. Doctors were forcing me to do the opposite of what most GP’s are telling their patients to do. Sponge and custard after lunch and tea, toast and cereal for breakfast. Insane amounts of milk (full fat of course!) and fruit juice. No exercise. Meals were followed by observations where we would have to sit in the lounge, watched by staff, being told off for so much as tapping our fingers. Bi-weekly weigh-ins where we were woken up, taken to the toilet where we would have to prove we had been, and were not water-loading, followed by the dreaded stepping on the scales.

It was a strange time of my life. I forgot the real world existed, I almost thought the real world was on pause, waiting for me. But it was not, and when I was finally discharged I had gained 37lbs which I lost in a matter of weeks.

I was not prepared for life outside of the hospital. It was a bleak time. I started giving up on the idea of ‘recovery’. I thought at best I would manage to survive.

Here we are, nearly a decade later. I underwent further treatment;  I had outpatient treatment in the Child and Adolescent Mental Health Services  (CAMHS), plus outpatient and day patient treatment in the local adult Anorexia Nervosa Service including some time on a gastroenterology ward in a general hospital following a bad relapse…and here we are! (I make it sound simple, ta-dah! It was not.)

Am I 100% fully recovered? Nah. Am I surviving? Yes. But more to the point, I am doing more than that. My eating disorder does not have a devastating impact upon me anymore. I can go out for lunch, eat in front of people, have cake on my birthday and roll my eyes when people tell me how they no longer eat chocolate (more fool them!). Most importantly I have the energy to live my life. I will admit that my eating disorder still lingers there, constantly. I still do not get a day free of it, which is sad. Ten years of not a single anorexia free day. However, it is not loud any more. Yes it is always there, but it is floating in the background. I control it, it does not control me.

How did I get here? Time and professional help, plus support from the people around me.

This is not the sort of illness that can be easily fixed. There is no magic wand. There is no overnight transformation. It requires a lot of patience, specialist care and baby steps – but it is possible.

Mark Austin did not get it perfect. No parent gets it perfect. I do not read his account to The Guardian and feel shocked. I do not think anything negative of him, in fact I applaud him for speaking up. I know what it is like to go through this kind of illness. It is arguably harder for the family than the sufferer when the person is at the worst stage of being unwell, with no sign of wanting to get better in sight.

What is not acceptable is to have professionals that do not take it seriously, like the GP who met me aged 14 and said I would be fine after my exams, and who never saw me again because I was sectioned in hospital; this is what is not forgivable. It will not be “fine.” It is not a problem that will go away however hard you try to ignore it.

We need to be willing to face up to the reality of eating disorders, and the support that people need. Recovery is not easy or quick, but it is possible.

 

 

 

 

 

 

Mental Illness Doesn’t Discriminate, So Why Do We?

I was at an appointment the other day. The staff were aware of my mental health problems, and they asked me what I do in my free time. I said at the moment I am working and at university. She looked shocked. She then said “unpaid work, though?” because obviously us crazy folk cannot hold down a paid job. I mean, what kind of fool would pay me to work?

It annoys me. Number one unpaid work is a brilliant thing to do for experience, and for giving something. Number two, why would you assume my job is unpaid?

I was then further annoyed when she said I needed to come back on Monday to see their consultant. I told her I had work, and couldn’t make it. She looked at me and said “well, you have to have see the consultant” and then booked me an appointment any way. I was stood there thinking ‘yup, please ignore me, my words mean nothing’.

I honestly do not think that if I was ten years older, and not in for something mental health related, she wouldn’t have ignored me. But hey, I am crazy so my job cannot be that important, right?!

We think that we have progressed with our attitudes towards mental illness, and my gut reaction is to say some progress has definitely been made. I mean, we do not lock everyone away in asylums anymore, people are not oblivious to mental illness, and people know what depression is. Mental health is talked about more. Being homosexual is no longer a sign of insanity, and we do not drill into peoples brains hoping it will ‘fix’ them like we did in 1935.

My research in my undergraduate degree proved that making a definitive conclusion is not that easy. Some things have improved, some things have not. Do you know what schizoaffective disorder is? What about obsessive compulsive personality disorder? Unless you have an interest in mental illness, or personal experience, probably not. Even spellcheck does not think ‘schizoaffective’ is a word.

While general attitudes have become better, I would argue it is something we are fine about as long as we do not have to come face-to-face with it, and for a lot of people mental illness is something that affects others, not themselves. Did you know that only 46.9% of disabled people are in employment? Which is a gap 33.1% higher compared to people without a disability. The disability employment gap is one of the most significant inequalities today.

In 2015 the Conservative Party stated that to half the gap they would need to change policies, practices and public attitudes.

Not all disabled people can work, fact. That is why there is no goal to get rid of the gap completely. But some can, and some want to. It is easy for people to respond to this huge gap by saying that disabled people do not want to work, that they want to live off benefits, and all of that other rubbish that realistically applies to a very small percentage of those with disabilities, and actually also to a larger number of people without

I do not personally have much of an issue with the term disability. I would agree that I do have a disability, and that it can be extremely disabling. But it can also be worked with if I am surrounded by people who are willing to be understanding, and to provide me the right environment to minimise the impact my disability has on my ability to work, and to succeed.

Starting my recent internship has made me aware of the difficulty I would definitely have to work full-time, while juggling my medical appointments. I can see why this could be unattractive for an employer, and even for me; even if I managed to find an employer who was happy for me to take time off work for appointments, it would mean that my disability would still be impacting my ability to work full-time, and receive full pay. But this is the thing. I would not think about that; that is something I have to live with, but being discriminated against, is not.

I would be overwhelmed by the amazing support of my workplace to enable me to work. I would arrange my appointments as best I could to avoid interruption. I would stay late at work if I could, or arrive early. I would give everything I could and more, and being able to have my necessary appointments would actually boost my productivity at work, compared to if I was having to delay them, hide them, or become stressed at managing them.

The thing is, people can discriminate against people with mental illness, but mental illness is never going to discriminate against you. You might have a negative attitude towards those with a mental health problem, but they are still going to come into your life. It is going to affect your colleagues, employees, friends or family, whether you like it or not. Whether you think it is something that happens in your life or not.

More scarily perhaps, is that one day it might be you. You could be the top dog in a major company who does not take particularly take an interest in disability in the workplace. You might be a bit irritated that your PA, Janice, has to take two hours off on a Wednesday afternoon because she has a one hour appointment with her community psychiatric nurse, plus has to travel to and from the clinic. You will forget Janice stayed at work for an extra hour on three days last week. You will forget Janice doesn’t take lunch breaks, and always emails back at weekends. You will forget that since Janice started her role, she has made your day-to-day life easier, and taken on many extra roles that you never expected her to take.

You will be reluctant to hire the best applicant for your new events manager because she disclosed that she has physical health problems that will mean she has to take some time off work once per month to travel to a hospital out of the local area. You will think that you need someone who does not have these needs, and that they are not suitable for your company, just like the principal that once said to my support worker that students with severe mental health problems are not going to achieve A-Levels, so why support them in trying to do so?

And then fast forward, it is 2027. You have been getting very stressed at work. Janice left, and her replacement is struggling. Your wife has been working away a lot, your kids have left home, and it is like you never see neither them or your wife any more; she admitted a few months back that she is not happy in your marriage. Your mother has Alzheimer’s (which is a mental illness too, but for some reason that doesn’t count) and she is deteriorating. Last time you saw her she did not know who you were. You have begun thinking a lot about your childhood growing up, and how she used to be. You keep remembering things you had forgotten; maybe your childhood was not as rosy as you had convinced yourself. You remember your father being very violent to your mother, and having to witness that. Bit by bit it is coming back to you, like a tap that no matter how hard you tighten it, it just will not stop dripping.

You feel low. You know you do. You say low, because you do not want to say depressed. Men do not get depressed, not strong men like you. Not top of the company men. Not men who earn £100, 00o per annum. Not men who are well educated, and whose parents were too. You tell yourself you will ‘snap out of it’ soon. Maybe you just need to work harder. Only weak people take a step back, take a break. But it is getting worse, and you end up going to see your GP. I mean, he will just say you are fine.

Well, apparently not. Apparently you have signs of depression, but mental illness is not something you will ever experience, right? He must be wrong.

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#TimetoTalk 2017

It is #TimetoTalk day tomorrow.

‘Time to Talk’ day is held by the mental health movement ‘Time to Change‘, which aims to change how people think and act about mental health to reduce isolation, and feelings of shame or worthlessness.

‘Time to Talk’ day tackles the difficulty of being able to be open about mental health problems by supporting people to be able to take the time to talk and listen.

For someone with a mental health problem talking can be a complicated issue. There is wanting to be open and honest Vs the fears of being judged and treated differently. There is wanting to share your struggles and experiences Vs wanting to maintain privacy. There is wanting to raise awareness and reduce stigma Vs not knowing what, nor how much, to say.

Talking is important. Being able to talk if you want to is particularly important; but I have to highlight that it is OK for you to choose how you approach this. Some people are private, some people are open, and many are somewhere in-between. There is no right or wrong way to talk about mental illness. We all share different things with different people; some people find strangers easier to talk to, some people prefer to talk to a select few. Some people talk online to raise awareness, but do not talk about it in their day-to-day lives.

Talking to raise awareness is incredibly important, but this does not mean you have to talk about anything you do not want to. The point of this campaign is to help people, not pressure them. You might just want to raise general awareness, rather than divulge personal information. Finding how you want to use your experiences and voice is a journey that takes time.

The reality is though, that despite amazing improvements in public understanding of mental illness, there remains stigma attached to having a mental disorder. There can still be feelings of shame attached to struggling with something that is both extremely common, and also not the your fault.

The biggest thing we need everyone to understand is that nobody is immune from mental health problems. The chances of you knowing a friend, family member, or colleague with a mental health problem is high. One in four people will experience a mental health problem in any given year. Not having a mental health problem right now does not make you immune. Having a great career, great family, good income, or anything else does not make you immune neither. Just become someone “looks fine” does not mean they do not have a mental health problem.

Mental illness does not discriminate; it can affect everyone. 

Sadly it often takes personal experiences to fully understand the impact and reality of life with a mental illness. It often takes having, or knowing someone with a mental illness, to make people take an interest – but mental illness should be something on everyone’s agenda.

“The way you act towards someone with a mental illness can change their life: by opening up to mental health you can make a real difference. ”

Time to Change

Mental illness is a disability, but with the right treatment, understanding, empathy and adjustments, it does not have to be disabling.

For ideas on how to get  involved with #TimetoTalk visit the website here.

If you have not yet signed the ‘Time to Change’ pledge and joined the 96675 other peopple who have, do so now!

 

 

 

 

 

Looking for participants in an online focus group on mental illness and UK newspapers

I am looking for a few people (12-20) to take part in an online focus group that is in a forum style. There is one active group right now, another will be made once the first is completed for those who have not taken part in the first.

The topic is the portrayal of mental illness in UK newpapers, and more specifically, whether the portrayal has changed. The only requirement is that you read UK newspapers (print or online).

You do NOT need to have a history of mental illness. If anyone is interested use the link below or message me and I’ll talk you through how to do it if you struggle. There are 4 topics and a lot of questions but there is no requirement to answer or comment on everything. I will be commenting on replies to create a two-way conversation.

This is the link: https://focusgroupit.com/groups/d46db971

If the number of questions overwhelm you, it’s fine to do as much as you have time for and it’s going to be open for a few weeks too.

Thank you!

National Eating Disorder Awareness Week 2016: Lets stop using this week to make the situation worse.

I dislike National Eating Disorder Awareness Week because I feel that it is not really about raising awareness at all. Every year this week is flooded with photographs of sufferers at severely low weights. While intentions may be good, on the whole this can be very triggering, and only contributes to the public’s misunderstanding that eating disorders are solely about weight. People are trying to change how eating disorders are perceived and shout “it is not about weight” yet post photographs of themselves emaciated in order to tell their story. These photographs resemble images you would find if you Googled ‘pro-ana’ (I do not advise you do) and it is not acceptable. Furthermore, journalists who are adamant about using such images and including intimate details about a person’s eating are simply irresponsible.

The less visible an eating disorder is, the less seriously it appears to be taken, which is something that can be particularly problematic for sufferers who never reach an incredibly low weight, for example, those diagnosed with Bulimia, BED (Binge Eating Disorder) or OSFED (Other Specified Feeding and Eating Disorder). I had (have?) a diagnosis of Anorexia Nervosa, and although I have now reached a healthy weight, I still struggle with disordered thoughts and behaviours. A healthy weight does not mean a person is not suffering, and having an eating disorder does not automatically mean being significantly underweight.

I was diagnosed in 2008, and hospitalised for a year on a psychiatric unit. I relapsed in 2011 and had a brief medical admission for re-feeding as it was not something I was able to do at home, and I have been fighting ever since. It has been a long journey, and gaining the weight has been difficult. It still is difficult. I did not just have to deal with gaining weight, I also had to come face-to-face with all of the thoughts and feelings I had been avoiding.  I know I am not overweight, but being heavier than I once was feels strange and it is hard to get used to. That being said, I would not go back for the world.

When I try to recall my worst times it is hard to remember much. But I do remember being violent towards my family, climbing upstairs to bed on my hands and feet because I could not physically walk (how glamorous?!) and crying my eyes out in the bath because clumps of hair began falling out. I do remember passing out down a flight of stairs and not brushing my teeth because I was terrified of the calories in toothpaste. I do remember having an emergency meeting with my mental health team because I had eaten one measly grape which lead to suicidal thoughts of a serious nature. I can laugh at it now, but at the time it was not funny at all.

Nothing in the world mattered to me other than my eating disorder. Not specifically losing weight, but wanting to show that I could cope without people, water, and food… anything that we all need to survive. It was never about wanting to lose weight to look different or to be ‘thin’. For some it is, at least to an extent, but for me it was not at all. I do not remember planning to lose weight. Over time little changes happened, and eventually I found myself eating very little, or some weeks, nothing. It was my coping mechanism, and I guess it worked for a while. I wanted to run away from all of the things that had happened in my life, and that were happening.

When things are tough, my reaction is to self-destruct, not to take care of myself, and when you don’t have any respect or love for yourself, it makes living very hard, and accepting love almost impossible. Starving myself was not about being thin. I did not want to look like a model or a celebrity. I did not even think I was fat until I was dangerously underweight. The more weight I lost, the bigger I felt. The only time I really had an issue with my weight, was when I was at my lowest weight. I feel happier with my body now than I did back then. I would almost say I feel ‘thinner’ now I am bigger. It makes no sense.

Prior to my eating disorder I suffered with depression, and like we talk about people self-medicating with alcohol or drugs, I guess starvation was my self-medication. When you are starving yourself you lose contact with the world. Everything feels distant and unreal. Your brain thinks about nothing other than food, and although that is hell because food is the one thing you will not allow yourself, it can feel a lot better than thinking about the things that are affecting you.

With eating disorders, people want to know what happened, they want the details of how much weight you lost. They want photographs. They want to know all about your illness, but not what happened to you before it. I want to try and tell you my story in the hope that it encourages others to share theirs in a similar way. I was depressed. I walked around school under a grey cloud. I struggled to socialise and would walk out of classes when things got too much, took frequent overdoses and began self-harming. I was existing, but I was not living.

I thought I had always been the annoying one, too loud, too much. I wanted to be less. I wanted to be the quiet one and if there is one thing my eating disorder did, it is silence me. I was no longer the Natalie that bounced around the place laughing and having fun. I no longer talked non-stop, which always drove my family up the wall. Suddenly I was quiet. I was still. I was less, and less was what I wanted. For me personally, this never was, and still is not about weight, and I will say this until I am blue in the face. It was about making myself numb. It was about having something else consume me, before my depression did. In many ways it was about survival, that is, until it nearly killed me itself.

Images of emaciated people are not helpful and do not represent the spectrum of those who suffer with eating disorders. What people need to know is that eating disorders are a mental illness, and a mental illness has causes, and these causes are never as simple as solely being down to the media, or just wanting to be thin. Stop reading about how low someone’s weight was, stop buying into the way the media tries to draw readers in with shocking stories of weight loss and photographs to match. Start asking why this happens without jumping to conclusions that this is just about appearance. My eating disorder was self-destruction, it was a way of hurting myself. It was a way of pushing away horrible memories and feelings. A way of coping with trauma. What I looked like when I was physically unwell does not show anything close to the pain I was suffering inside.

It is time to start understanding that people who develop symptoms of a mental illness have gone through a journey that started a long time before those first signs display themselves, often years before. The deep-rooted causes are much more important than stories about hospitalisations, and photographs of emaciated bodies. We need insight into why these disorders occur in order to begin to find ways to change societies understanding of them, to pick eating disorders up earlier, and to treat them as soon as possible. These stories can offer insight that could help a member of the public notice if someone close to them is showing signs of an eating disorder and this is why we need to raise awareness. We need to work together to stop eating disorders from stealing people’s happiness, and often lives. That is the reality.

Yes I have mental health problems, no I do not know how everyone feels.

I think this is an important thing for everyone to recognise, especially writers, bloggers and professionals.

I have mental health problems. I do not necessarily know how someone else feels. Number one, there are many different types of mental health problems just like there are thousands of different physical health problems. Someone with a broken foot doesn’t necessarily know what it’s like to have diabetes.

Number two, no two people experience one thing the same. Two people may have diabetes but their physical symptoms and their emotions surrounding it may be entirely different (and even a tiny difference can make an experience totally different).

That being said, I have mental health problems and I can be understanding of, and empathetic, towards those that do. I don’t know what they are exactly feeling, but I have an idea and some of the things I feel may be the same or very similar. I also do know what it is like to have an illness that at times feels stigmatised and shameful, hard to talk about and lonely. I also know some strategies to help.

Sharing my experiences may help. Some of the stuff I say may not, and I will never assume I know how someone else feels just because I have a mental health problem too. I won’t even assume I know because we have the same mental health problem. What leads us to where we are is never going to be the same, and our experiences are never going to be neither. And I think this is important to realise.

I think it is all too easy to assume certain things, and over identify with people, which is harmful in more ways that I can explain but can also lead to you not understanding why if something worked for them, it doesn’t work for you. Or it can make you compare yourself in other ways, like with eating disorders. “I’m not scared to eat that, does that mean they are worse than me and I don’t really have a problem and I don’t deserve help?”.

I reiterate that there are a million ways it is harmful, and I cannot begin to cover them all. One I will highlight, for any professionals or carers in particular is what I experienced today.

I’m going to keep the details vague. Somebody told me that they know how I feel because someone close to them in their life has self-harmed in the past. At first I felt relieved to hear it because I thought “this person is going to understand, and isn’t going to treat me like I am wasting their time” but I soon changed my mind, hence this post.

The person assumed too much. They assumed they knew why I self-harm by using the reasons their relative self-harmed. They stole me of my own words and built my story up using their story when my reasons for self-harming were nothing like their relatives and therefore what she was describing and advising was totally irrelevant to me.

Now, this person meant well. They were lovely, and I was not at all angry. But it does worry me that this happens a lot. Professionals need to remember, regardless of their experiences personally, that the person sat in front of them has a different story of their own, and I often think this is one of the problems that can occur especially when people enter the mental health field (this person was not in the mental health field) because of a personal experience of mental health.

I think personal experiences can be valuable, priceless. They can also give people tunnel vision if you like. They can’t see outside of their experience and sometimes they say too much about their experience and it’s important to remember your job role is for the patient, not yourself, as harsh as that may sound.

It’s not necessarily a criticism, but I think it’s an important thing to be aware of.

One reason I am glad I left mental health nursing is because I know I over-identified with patients and was too emotionally invested.