Tag Archives: anorexia

Survey reveals referral rates need to improve

As part of Eating Disorders Awareness Week, Beat, the UK’s leading eating disorders charity, asked nearly 1700 people, (1420 of which had an eating disorder, the others knew someone close to them with an eating disorder) about their experience with GPs.

I took part in this survey to get my voice heard and it seems many people feel the same way I do…

The survey revealed that half of sufferers rated their experience as “poor” or “very poor”. Of people who would have benefitted from immediate psychological support 3 in 10 were not referred to specialised services.

More than half of the sufferers felt their GP didn’t understand them and only one third (34%) thought their doctor knew how to help them.

Only 20% of patients came away from their appointment with information about eating disorders and services that could help them.

It will have taken many of these people months if not years to have reached the point of asking for help, the courage to make the appointment, get through the door and start talking about their problem would have taken such courage, to be turned away with nothing is very worrying.



Why is early referral so important? Simple – recovery rates improve.

Anorexia has the highest mortality rate of all mental illnesses and currently, of those who live, many remain chronically ill. The sooner someone is referred for specialist support the higher their chances of full recovery.

It is important to work out why these vital referrals aren’t happening…

I do not want to come across as GP bashing, there is no way that some of the most caring people in our society are deliberately denying people the support and treatment they need. Andrew Radford, Beat’s Chief executive believes medical students, hoping to become GPs, need more training. I went to medical school, the shear volumes of information you need to absorb is vast. Maybe it’s not just about “recognising the signs and symptoms” as Mr Radford put it, maybe there’s more to it.

When I went to the GP as a 15 year old, I was not referred. I was not given any information. I did not receive the help I needed. It was hard enough just getting through the door but there is no way of turning back the clock to find out why. Maybe I didn’t explain myself well enough? Maybe there should be more eduction in schools so I was more equipped when I went to my GP?

My experience was 20 years ago but the Beat survey reveals this is still happening today. Is it the “old school” doctors who aren’t keeping up to date with training? Do newer GPs need more training? Are GPs/secondary services using out-dated/overly stringent criteria as referral criteria e.g. BMI? Is there an inaccurately held belief that if you refer someone there’ll develop an eating disorder where there wasn’t one? Are GPs so overworked, although they know the signs and symptoms to looks out for, they miss them? Do they think, “if it’s that serious they’ll come back”? Do patients go with too many problems and the GPs are distracted by other issues they consider more important? Do doctors not have enough times to refer people? Are doctors unaware of what secondary care is available? Do GPs think the secondary care is inappropriate/unhelpful? Is the mental health stigma still getting in the way?

We really need to get to the bottom of what is going wrong in the consultations where people are not getting what they need.

Perhaps some positive news is that once some of the sufferers swapped GPs (as nearly 1 in 6 did) they reported receiving the help they needed. When I approached a GP in my 20s I’m very glad to say I’ve had much better support. By this time I was a lot sicker, my GP had to persuade me to access the secondary and then tertiary services, she was excellent. Since then, I’ve moved a couple of times and each time, I’ve had a mixed experience with GPs. It’s been very difficult to find what I need but each time, with some perseverance I’ve found a GP with the right skills and experience to support me. Maybe I am a tricky/difficult patient but I’m definitely not alone with these feelings as the Beat research reveals.


Somehow we need to make sure that every single one of the 725,000 people in the U.K. affected by an eating disorder gets the support and treatment they need to recover.

Please share your thoughts in the comments section below.

For more information:

Independent.co.uk

Full results of Beat survey

Confessions from a disordered mind

So, it’s eating disorder awareness week again and I fear, yet again, I will be “preaching to the converted”… not that I preach (I hope) but I fear my blog only reaches those people who already know about mental illness, those who are already interested, those who suffer themselves or who care for someone who is or has been mentally ill. People reading this do not really need their awareness raising, so…what’s the point?!

I’ve challenged myself to go a bit deeper this year. Maybe my audience are aware of mental illness, even aware of eating disorders and anorexia. But how many of you actually know what it’s like to be stuck on the treadmill of starvation where you beat yourself up because you wonder if you’ve chosen to be ill but when you try eating an apple, a voice tells you “if you don’t cut it into 36 pieces, you’ll put on 6 stone”?

Anorexia isn’t about choosing not to eat or just liking healthy eating. It isn’t sexy or glamorous. It isn’t about losing a bit of weight, being a moody teenager, being awkward or deliberately deceitful. It’s a serious mental disorder where your every waking moment is driven by a desire to lose weight and your nightmares are dominated by fear of fat. The interlinking of thoughts, emotions and behaviours and your interpretations of these is incredibly strong, it can feel impossible to break the automatic cycle.


The voice (I later called Ana) was with me 24/7, in bed, at the supermarket, while with friends, when I was alone, she never left me alone. I thought she was my friend as she gave me hints and tips to achieve my goal. She persuaded me to make trips to a supermarket that was further away because they sold products lower in fat and sugar. She kept me going when I slowed through exhaustion while out running, she made me run faster, harder, further. She helped me say no when I was tempted by cakes and biscuits. She made me walk instead of use the car, even when the weather was cold and wet. She gave me a buzz when I lost weight but didn’t let up, she made me strive for the next target.

With anorexia I was devious and deceptive. I’m ashamed of some of the things I did. This is common. My focus became losing weight, my aim was to consume as few calories as possible and use up as many as possible. Continuing with a vaguely normal life became difficult, impossible at times. I’d pour milk into a bowl to pretend I’d eaten cereal. I’d say I wasn’t hungry when my stomach was in knots. When offered food, I’d say I’d already eaten when the truth was I’d not eaten for days. On one hand I hated wasting food, on the other, I’d throw food away. I hated lying but if I was to achieve my goal I had to. Unfortunately, the more weight I lost, the more I had to hide. I also self harmed, I had to hide this as well.


Why was I so determined? I felt out of control of my body (during puberty) and of my emotions. I’m a highly sensitive introvert who felt like I didn’t fit in the world. I thought my food intake and losing weight was the only thing I could contol. As with any other coping mechanism we use to make ourselves feel better/happier (smoking, shopping, drinking alcohol) there comes a point where they stop helping and start becaming a problem in themselves.

The more weight I lost, the better I felt about my body, I got a pleasure, I felt a a sense of achievement. But each time I achieved my goal, I had to set a lower goal weight. The lower my goal weight, the harder it was to achieve. The harder I had to work at my eating disorder (yes, it’s hard work) the more unhappy I was. Anorexia is full of contradictions.

There came a point when I realised my goals for life weren’t compatible – I did not have enough physical or emotional energy to be the person I wanted to be and to continue losing weight. I had to decide which I wanted more. Unfortunately, it’s not as simple as just choosing to recover.


When trying to recover the juxtaposition of desperately wanting to get better with desperately wanting to continue losing weight (because you know you feel better lighter and feel worse heavier) is an impossible battle. It didn’t make sense to enter into a recovery programme, signing up to gaining weight, knowing this would make me unhappy. I was unhappy with my life dominated by thoughts of avoiding food, avoiding social situations involving food and constantly trying to use up excess calories, I knew I would be unhappy gaining weight and feeling excess fat on my body. This is a very difficult experience to explain.

As I wrestled with recovery, there were so many reasons to fight to get better but anorexia is powerful. I needed people around me with a lot of patience. Recovery is never a smooth journey and there were many hurdles and many set backs but it is possible.

When I tried talking about the voice I heard I was asked to give it a name (a well established therapeutic technique) but I insisted on calling it Frances because I knew rationally it was me… it felt like someone else but I knew this wasn’t actually possible. In an odd way, my insight was working against me.

Once I gave in and called her Ana, it became easier. Instead of blaming myself, feeling angry at myself, beating myself up etc…I started aiming all my anger and frustration at Ana and started fighting against my illnesses instead of against myself.


Is life plain sailing now I’m recovered? No, of course not! But, although I may never love my body, it is what it is and I make my own decisions now, I’m not dictated to by disorered thinking.

Is it a diagnosis, a label or an identity?

I’ve had a number of conversations over the years about the language used around mental illness – it’s complicated matter, made more complicated by people not knowing the power behind their words.

“I am not my illness”

I’ve had a gentleman with schizophrenia say they detest being called “schizophrenic”, explaining this by saying “you would not say someone is a cancer”. However, we are not saying he “is schizophrenia”, we would be saying he “is schizophrenic” just like we say someone “is diabetic”. However, I think what he was trying to express was that he is not his illness, he did not identify with his illness, he did not want to be labelled in this way and this is to be respected.


Even professionals use words derogatorily

If I said someone “is diabetic” I would not have any opinion or judgement on their personality or any other characteristics. However, I recently heard a paramedic say this patient “is schizophrenic” with so much power, bitterness and judgement, I could tell he was casting aspersions on this person’s character. I had presented my service users as a “56 year old gentleman with [a number of medical complaints] and schizophrenia” as information that may lead to conclusions about the current presenting complaint. While one person may be able to say someone “is schizophrenic” without any preconceived judgements, this paramedic was not one of them. Stigma in society is so strong, but it’s people who are being stigmatised that suffer, those doing the stigmatising don’t realised a subtle language change could have a powerful impact. With this small change, a person is not labelled as their illness but someone who has an illness.

“I am more than my illness”

Mental illness can have a negative impact on one’s identity. When I was diagnosed with anorexia I could have let this be my identity… i could have felt, I am not Frances anymore, “I am anorexic”. I have seen people so consumed by their illness, they may as well say “I am anorexia” – I am not a person anymore, I am an illness. But I did not want to label myself in this way, although it was true I was “anorexic” I preferred to see myself as “a person with anorexia”, then my character and personality traits could exist alongside my illness. It has been proven that assumptions about what it means to be mentally ill such as incompetence and inadequacy (commonly held) will lead to a vicious cycle of impoverished sense of self and low self esteem, ceasing to try and work or fit into society and poorer psychosocial outcomes and sustained symptom severity. (Read the full article here.) It follows that, if you identify as your illness, you identify as incompetent and inadequate, whereas if you consider yourself to have an illness, you are not your illness, you can distance yourself from these negative characteristics.

Of course, this is down to the individual and if saying “I’m bi-polar” or “I’m schizophrenic” does not impact on their ability to see themselves as separate from the illness that’s their prerogative. Or, if they want to be identified as their illness, that’s also, up to them. Perhaps I’m saying, from within a mental illness it can be very difficult to see the path to recovery, how you see yourself in relationships with your illness can be the turning point. In my opinion, recovery and turning away from being consumed by mental illness is possible for everyone (recovery may not mean cure – but that’s a subject for a different blog).

labels

When is a diagnostic label unhelpful?

I’ve had other conversations with people who think we should do away with mental illness diagnoses all together as the words can have such a negative impact on the experience. It can be very confusing when some words can be used by the general population, for example feeling depressed or anxious are valid and appropriate emotions, however, clinical depression and anxiety disorder are very different experiences, in some ways a million miles away from the basic emotion. For other diagnoses there are other problems e.g. the use of derogatory terms, such as “schizo” which has been used to mean “unpredictable criminal”. Personality disorder is a confusing term, we think (as society) we understand what is meant by personality so if someone’s personality is disordered, surely, their core being is fundamentally altered/damaged? Well, no, personality disorders are extreme complex and there is much discussion about changing the label to fit the experience better. But an individual experience of different personality disorders is unique such that everyone has a different perspective on which words would be more useful.


Of course, diagnoses are an essential part of communicating. It’s helpful if a collection of symptoms has a name so that treatment can be targeted appropriately. I have also had the experience of an inaccurate diagnosis being used which then had a negative impact on the treatment I received.

Language changes, this is normal

The word spastic used to mean “muscle spasms, a common symptom of cerebral palsy” – it is now an offensive term, because of how it was used, and has fallen out of use. The media may hide behind “the dictionary definition”, but if we follow this through, we can still use the word spastic, but we don’t. The ~”dictionary definition” of “schizophrenic” is “a person with schizophrenia” or “contradictory”, e.g. “the rehearsal was schizophrenic” could mean “frantic and disjointed” but this is as it’s at odds with the definition of diagnosis. Many people still think someone with schizophrenia has a split personality or they will definitely be violent…continuing to use the word in different contexts perpetuates this misunderstanding of the illness.

Just hoping people think about what they say…

It’s not hard to change, “schizophrenic person” to “person with schizophrenia”.

Breaking down stigma is vitally important in a cruel and judgemental world. Not realising the power behind our words can have a negative impact on those affected by the illness by perpetuate societies misunderstanding, judgements and stigma. Even if you do not mean offence by the words you use it can have more of an impact than you realise.

Another challenge ticked off!

As some of you will know I’ve written about my experience with anorexia and I’d like to share with you a recent hurdle I overcame and hopefully give people a little insight into the continuing recovery journey.

struggle

I’ve been “weight restored” for a few years now but the battle doesn’t end there. I’ve spent the last few years continuing with the challenges of eating different foods, eating in public, wearing different clothes and gradually I’ve accomplished each step, some falteringly, some more naturally with a lot of support. I would consider myself recovered but I had one thing left to do that I didn’t want to force, I had to wait for it to come up naturally and for me to be in a good place when it did come up!

Last night, I ate a main meal in public with people who aren’t close friends and/or family (it was a work social).

To a lot of people this is fairly standard and wouldn’t faze them but to an introverted recovering anorexia sufferer, this is the ultimate hell…but it wasn’t!!

I’ve previously done this with Steve (my husband) by my side. He provided a safety net should I struggle in any way. I know he would be there if I asked him to be, whenever I needed him. But last night, there was no safety net.

introvert

As a life long (there isn’t any other kind) introvert I’ve learnt how to manage social situations by putting on a bit of an act. As a child and young adult I would do this naturally as I’d automatically learnt to pretend I was someone I’m not to try and vaguely fit in. Once I realised I was doing this, I went through a bit of an angry stage, feeling annoyed that I had to be someone else to please other people. Now, I have peace with it – most of the time, I’m myself (quiet, reserved, choosing to listen rather than talk) but if necessary, I can use other skills (that are still part of who I am) to be a bit more “life ‘n’ soul”.

So, putting the introversion to one side, a short list of challenges lie ahead:

  1. Choose from a menu in a restaurant I’d not picked
  2. Engage in conversation (with people I don’t know very well) about food
  3. Not make any disordered comments
  4. Eat (a vaguely “normal” portion) while other people ate too
  5. Sit with any feelings that come up and not react unhealthily

Choosing food

I’m starting to enjoy going out for dinner with Steve but I’m usually at least 50% responsible for picking the restaurant. I’d had no say in this work social but no. 1 on my list wasn’t too hard as vegetarian options were limited (which I find helpful!) and they had a clear description of what they were under each heading. I still have calories, fat and sugar content swimming around my head but just picking something was the objective and I managed this.
Engaging in conversation

No. 2 isn’t too hard but combining it with no. 3 is tricky. It seems “normal” for women to be on diets and men to joke about it. I’m afraid I’m never going to be happy joining in with that sort of banter. I have 2 colleagues trying to lose weight and therefore avoiding carbs. At what point in history did carbs become “bad” and cutting out an essential nutrient become “good”? And I had a male colleague trying to get everyone drunk. I could join in the diet conversations with comments such as “you have to push past the hunger and see the pain as a good thing” but I think I’d get some funny looks! I work hard to join in other conversations and my imminent Kenyan safari holiday comes up. I’m very very happy to talk about that!

powerful

Portion size and eating

Food arrived in separate bowls and it was a case of serving yourself. Portion size is really tricky when you’ve had a voice yelling at you about individual granules of sugar or gram of fat and hunger signals have become unbalanced for many years. 1 table spoonful of rice can look like an overwhelming large portion to someone with anorexia so I still tend to glance at what other people are doing to judge what’s a “normal” portion. This doesn’t always work as normal doesn’t actually exist! But, fitting in with an average portion was possible! I sometimes struggle eating with other people if they’re particularly messy, or eat particularly fast, or slowly but I sit with these feelings and it’s ok. I didn’t have a voice yelling at me I wasn’t allowed to finish my dish (as that would be greedy) or social etiquette yelling at me it’s rude to leave food. I just ate what I wanted and left the rest. No. 4 executed while sustaining numbers 2 and 3!

ticks

Sitting with feelings

Feeling exhausted by this point but a very good sign is that my cheeks are aching from laughing and smiling so much. I’m not too full but I’m very glad there isn’t the shall I/shan’t I? question over dessert as my colleagues are going on elsewhere to continue drinking while I go back to work so the evening, for me, draws to a pleasant close. I’m please with how the evening’s gone so I can tick off no. 5 too!

Feeling accomplished!

hooray

Low self esteem: The hidden condition

Low self esteem can be a painful condition and many of us suffer in silence, unaware of the damage being done, unaware that there is a way out.

Throughout my mental health journey, I was asked numerous times if I had low self esteem, I would struggle with this question. The definition of self esteem is:

“Confidence in one’s own worth or abilities; self-respect”

Since I did not believe I had any worth or abilities, how could I possibly have confidence in them? I did not believe there was anything about me to respect. Therefore, the question baffled me because if there is nothing to feel good about how could I rate it as low or high? It’s only since my self esteem has improved have I realised how rock bottom it was and I had previously been viewing myself through a distorted lens. Once the cycle of low self esteem started, add in mental illness and you soon reach no self esteem!

We build a picture of ourselves and  our self esteem grows from a combination of the following:

  • Experiences at home, school, work and in the community
  • How other people react to you and treat you
  • Illness, disability or injury and how those around you cope
  • Your own thoughts and perceptions
  • Culture, religion and societal status and role
  • Media messagesself esteem boxes

Problems associated with low self esteem include:

  • Feelings of fear and anxiety – an all consuming fear of doing something wrong, looking stupid.
  • Isolation and avoiding new situations – these things can feel too overwhelming when you assume you won’t be able to cope.
  • Staying quiet and not sharing thoughts or ideas, not initiating conversation – anything to avoid looking bad, stupid of inept and avoiding rejection.
  • Underachieving and lacking ambition for fear of not coping or being rejected,
  • Or overachieving – constantly working inordinately hard to prove worth and competence to self and others, striving for perfection and perceiving failure if it’s not achieved.
  • Seeking or remaining in destructive relationships through fear of not managing alone.
  • Depression – persistent low self esteem with negative self-talk can lead to other symptoms of depression such as low mood, not sleeping, poor appetite etc
  • Hypersensitivity – assuming negative thoughts from others leads to being on the look out for these signs that confirm these fears. These could lead to acting on a sign that wasn’t perceived accurately (for example a compliment will sound sarcastic). Sometimes people will throw out “tests” to see what people think of them.
  • Lack of assertiveness – anxiety and fear can lead to difficulties sharing feelings and asking assertively for needs to be met. This can lead to people being passive and being “walked on”, which can lead to a build up of pressure and aggression being expressed as being defensive, sarcastic, brusque or even rude. Putting other people down (not necessarily deliberately maliciously) may be a way of covering up a low self esteem. Being passive-aggressive is common, examples include being manipulative, planned tardiness, throwing out cues for others to pick up on and gossiping.
  • Obsessions or addictions can be a way of coping or covering up. From workaholic behaviour through to developing serious mental illness such as anorexia or obsessive compulsive disorder with intrusive thoughts etc
  • Behaving in a needy way, relying on others for direction and trying to please others.

None of these are meant to be criticisms but it’s helpful to know that people behave in all sorts of ways, unintentionally, in order to manage such a negative feeling. It may be helpful to realise that you have low self esteem and that how you’re managing it is having a negative impact on you and the people around you. If you notice other people’s behaviour is annoying, unhelpful or irrational, this may be the tip of the iceberg and it might be worth thinking about whether their self esteem is playing a part, the real root may be hidden.

My lack of self esteem was mostly internalised and exaggerated as I turned to self punishment.

self esteem not good enough

I became depressed, used self harm to manage my emotions and hid inside anorexia to manage strong negative feelings about myself. Once I was on my road to recovery and I was able to reflect on some of my unhelpful thinking I became very aware of my fear of arrogance – my overwhelming fear of my head being too big had pushed me so far in the other direction I was suffering for it! A balance is important. (Arrogance is unattractive, and while some people may think it’s got them places, I never want to venture down that path.) I can be assertive while using humility to keep arrogance at bay!

It is really important to boost your own self esteem and the self esteem of those around you and to avoid unhelpful coping patterns. Here are some tips:self esteem don't compare

  1. Stop comparing yourself to others – a trap a lot of us fall into, thinking it helps us know where we stand but it’s unrealistic as we’re all unique with different abilities and strengths. Get to know yourself rather than thinking you need to be the same as someone else.
  2. Don’t strive for perfection – some people believe only God is perfect, others believe it does not exist. Being OK with “good enough” was one of the best things I ever did for my recovery. Don’t get me wrong, I love my perfectionistic streak (it’s part of who I am) and I can turn it on if I want to but I keep it in cheque!
  3. Make mistakes – it’s natural, it’s the way we learn and it’s fun! They will happen, there’s nothing we can to avoid them so we may as well enjoy them! Apologise if necessary, learn what we need to, treat yourself with compassion and move on – that’s the most important bit!
  4. Focus on the things you can control – focusing on our worries and the things we can’t control leads to a downwards spiral of negativity. Instead, if we look at what we CAN change not only will we feel better but we’re more likely to actually achieve what we want.
  5. Talk to yourself in a positive way – imagine recording a repeater tape with “I’m no good, I can’t do this, I’ll never achieve anything” – if you didn’t believe it in the first place, you will after a very short time! This is what goes on inside the head of someone with low self esteem. Instead, we need to replace it with “I can do this, I’m an OK person” etc. Work out what you want and tell yourself you can do it! If someone you know has low self esteem, make sure you are their positive repeater tape – without prompting tell them they are lovable, tell them what they’re good at, tell them they’re unique.self esteem be careful
  6. Do things you enjoy and help others do the things they enjoy – having low self esteem makes you focus on the things you’re no good at. For once, just relax and do something you know you’re good at – go to the park and read a book, spend some times stroking your cat, make a smoothie, do some weeding. Anything! Helping other to find something they enjoy has its rewards – it will improve their self esteem and you might find something new and fun too!

self esteem you are good enough

Breaking out of low self esteem can be hard. It’s especially hard if its become habitual to behave in these ways over years and years. But improving self esteem will improve every aspect of your life! Feeling better about yourself will mean you will be able to:

  • Communicate better, which in turn improves relationships, from intimate relationships to work colleagues to acquaintances.
  • Manage challenges better – challenges come along, they can defeat us or make us stronger depending on how we approach them.
  • Managing illness better – one of the biggest improvements I’ve seen is that when I’m unwell I’ve started asking for what I need instead of assuming I don’t have a clue and hoping other people will know better than me!
  • Get what you want out of work – being honest about whether you want to achieve highly, be a CEO or whether you want something else – don’t let your self esteem dictate whether you over or under achieve!
  • Have a healthy work-home-life balance – everyone’s different and needs/wants different things out of life. We should not allow our self esteem to allow us to be dictated to by others. Working out what works for us as a unique individual is vital for a healthy life!

If low self esteem is caught up in mental ill health, external support will be vital, recovery is tough but I wouldn’t give up my journey for anything. I’ve learnt so much about me and those around me, my life has been enriched by the experience. Wherever you are on your journey or whether you’re journeying with someone else, I hope my blog has helped in some way.

self esteem just be yourself

Not sick enough

Imagine you feel so overwhelmed by your feelings that you cope by cutting down on food…
Imagine that as you lose weight you start to feel a bit more in control and a bit better…

Imagine that you start hearing a voice that tells you to eat less and less…

Now imagine the voice shouts at your when you eat, tells you you’re stupid, fat, lazy…

Imagine that the only thing that makes sense in your life is not eating and losing weight…

Imagine that one day you start to feel scared of this thing that once made sense…

Imagine that you think you might need some help because you’re scared of your thoughts, scared of this voice, scared that you might actually be unwell. You’re scared of getting help but you’re more scared of not getting help…

Now imagine, you’re told, you’re not sick enough, your weight is too high, you’re not skinny enough to get help…

Now, that voice will scream at you even louder because not only did you consider fighting back against the voice but a professional has actually agreed with the voice that you should be skinnier…

This is what is happening up and down the country because the NHS doesn’t have enough money to help everyone and they have to find some way of deciding who they can help.

This is a crisis within the NHS.

I was tossed from service to service with a number of different mental health difficulties…on numerous occasions I would admit that I wasn’t eating or that I was making myself sick or doing a number of other disordered behaviours but my BMI was never quite low enough for that side of things to be taken seriously. When it finally was, I was offered “psychoeducation” (would you believe my computer wanted to change that to “psyched inaction”?!) because my BMI was 17. My BMI had to drop below 15 before I was offered more intense support. I did not deliberately drop my BMI to get the support, it was something that naturally happened because I was ill, I didn’t understand what was going on and no amount of “education” about what my body needed was going to stop the tourment inside my head that told me I was stupid, fat and lazy and had to lose weight at all costs. If, however, I’d been offered more intense support earlier, I know I would have recovered more quickly and cost the NHS less as I would have needed fewer therapy sessions to undo the extra damage that had been done.

These barriers to treatment are a false economy. Assessing anorexia and other eating disorders on physical signs alone does not take into account the fact that there are complex mental elements to the disorders. Mental health services need more funding so they can:

  • Stop only treating the critically physically ill
  • Treat everyone with a mental illness who needs it, when they need it
  • Support people for as long as they need it instead of cutting treatment short

Related articles:

If we’re “other”, are we mad, bad and dangerous to know?

barriers#2

When considering language, my first port of call is a dictionary to make sure I understand exactly what the word means. But language is complicated by the fact that we use words in different contexts and will mean different things as we try to communicate from our unique set of experiences. For example, do you say “loo”, “lav”, “toilet”, “bathroom” or even “restroom”? For some would consider one more posh than another but if you use the more “posh” word, are you placing yourself above someone who would choose the more “common” word?

Definitions can be found in dictionaries, but the real meaning can only be found when considered in social context. When I hear that someone has a mental health condition, to be honest, not much happens in my brain as I know everyone’s story is different and I do not know someone until I hear their story (once I hear this, empathy is the most usual emotion I experience!). But for a lot of people, they hear “mental health” and a torrent of assumptions and questions will cascade through their mind, “are they dangerous?”, “will they be weird?”, “are they going to cry all the time?”, “are they going to be off work sick all the time?” or maybe “will they be like my friend I know has X condition”.

Stigma and discrimination in mental health are rife due to misunderstanding and the presence of barriers. Our world is full of boundaries. It is interesting to observe that social boundaries e.g. “who’s in, who’s out” are harder to shift than physical boundaries e.g. a garden fence.

Is it helpful to consider mental health conditions and continuation of the norm? This could enable people to develop a degree of empathy with those who have a diagnosis. It could, however, have the opposite effect as it is difficult for people to understand that one person can cope with anxiety, while the next person cannot and, where is the threshold for a diagnosis? “If I can cope with feeling down now and again, why can’t you?”.

Do we call it “mental distress” so that people can relate to the words? Or does this diminish the experience?

Is it more helpful to set mental illness apart from “the norm” and consider them “other”? Unfortunately, history has shown us that this leads to high levels of stigma and discrimination as being “other” is associated with being “bad”, “mad”, “imperfect”, “uncontrollable”, “unpredictable” and generally not fitting in, which is just inconvenient!

At times during my illnesses I can see quite easily that my symptoms have been an extension of the norm, a continuum. For example when my mood has been low…how many days is ok and when have I slipped into not really functioning anymore?

But at other times, I’ve definitely felt “other”. For example, I would hear a voice tell me not to eat the yolk of an egg because it contained cholesterol and I obeyed the unquestioning compulsion to only eat the egg white. At the time, I knew it was healthy to eat the whole egg and that I actually needed the nutrients but it was impossible for me to consider this. At times I felt so alienated and “other”, I was crying out (literally) to be “normal”, the only problem being, I had no idea what normal was! Now recovered, I feel my brain works in a completely different way, I still know that the yolk of an egg contains cholesterol but I never question eating it.

There was also a point in time when I decided suicide was not an option. Before this point, I was told it was important to get to this point but I couldn’t understand how this was possible – surely for every human being on earth it’s an option? Maybe not a serious one, but it’s there?!  Once I did  get to the point where I decided it wasn’t an option, I began to fight for a better life. There is no continuum, suicide is either an option or it’s not.

So what’s the answer? Education! The problem is not whether we’re the same or different, the problem is the value we attach to the differences. In truth we are all different and it’s far more fun to celebrate those differences than set up barriers and fence people into categories.

So how do we view people with mental health problems? Is it a continuum so we’re all the same and this keeps everyone safe from prejudice? or can we tolerate difference?

There’s nothing wrong with trying to relate, empathise and share experiences but what if “other” just means different and doesn’t mean mad, bad or impossible to understand? What’s so scary about different?

What if “other” just means “I have a different story to share”.

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9 truths #WeDoAct

WEDAD

2nd June 2016 is the first World Eating Disorders Action Day. “They” have put together “9 truths about eating disorders” so I thought I’d share my reflections on each of them:

  1. Many people with eating disorders look healthy, yet may be extremely ill – this prevents people getting the help they need for a variety of reasons. I looked “normal” so I didn’t think people would believe me if I said how much I struggled with food or how little I ate. I also struggled to be around people who did look ill as I didn’t think I belonged there or deserved help as I wasn’t “ill enough”. This misconception needs to be broken down in order for people to receive the help they need.
  2. Families are not to blame and can be the patients’ and providers’ best allies in treatment – I know my family have found it hard but they have stuck by me through all sorts of mess. Some people are not as fortunate as me. Sometimes guilt can be an unhelpful barrier to working through the difficulties.
  3. An eating disorder diagnosis is a health crisis that disrupts personal and family functioning – when I first asked for help as a teenager I did not receive a diagnosis, maybe it would have been helpful to have addressed it square on at that point. By the time I did receive a diagnosis my functioning was already disrupted but I was in denial as to how unwell I’d become and it didn’t seem real
  4. Eating disorders are not choices but serious biologically influenced illnesses  in truth, at times, I perpetuated my eating disorder by making the wrong choices but I was not being deliberately awkward or manipulative; my mind was sick. Some people get caught up in the “pro-ana/mia” influences but no-one chooses to be caught in the swirling hell that is a true eating disorder.
  5. Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations and socio-economic statuses – I was one of typical ones at onset a female teenager but I’ve met males and females of all ages from the UK and abroad. All affected differently, all requiring unique understanding but all struggling with the same basic issues – eating disorders do not discriminate.
  6. Eating disorders carry an increased risk of both suicide and medical complications – alongside a diagnosis of depression my life has been at serious risk of ending a number of times. Even in recovery I continue to have to come to terms with the long term medical complications.
  7. Genes and environment play important roles in the development of eating disorders – it has been shown that a genetic predisposition may be present but as with all illnesses, how the individual interacts with their environment will play an important role. Some people say stick thin models are a bad influence, others say constant “diet talk” is unhelpful. I think talking from a young age about how to look after our mental/emotional well-being and how to be compassionate to ourselves and others is vital – whether buzz words such as “body confidence” are used or not, just raising the issues so it can be talked about openly will break down the taboo and stigma.
  8. Genes alone do not predict who will develop eating disorders – there may be no hard and fast way of predicting eating disorders but this does not mean they cannot be prevented. Raising awareness and education will enable people of all ages to spot early signs and seek help before developing a full-blown eating disorder.
  9. Full recovery from an eating disorder is possible. Early detection and intervention are possibleI did not receive the early help required and only received the right help after years within mental health services but this does not need to be everyone’s story. I am proof that even over rocky road, recovery is possible.

Resources:

World Eating Disorders Day

B-eat

Anorexia and Bulimia Care

6 conundrums of online dating with a mental health diagnosis

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Online dating is now the second most common way to meet people (after meeting through friends) and it accounts for over 20% current committed relationships and this number is growing. As an introverted, bottom of the career ladder, divorcee, the  advert practically wrote itself! In a world where “women’s desirability peaks at 21” once I was ready to be thinking about dating again, I was considered over the hill! I’d been in the mental health world for many years, out of work and my self esteem was pretty low. My last relationship had ended with my mental health playing a large role. I’d been hurt when most in pain and it was hard to consider trusting anyone again. I was ambivalent about wanting someone else in my life.

1. Am I ready? I did not want my mental health to dominate a new relationship, nor did I want my unhealthy behaviours to be considered normal but I felt, for my personal recovery journey to continue, having that someone special, just might be the key. I think it’s important not to look for someone who’ll fix you, that won’t work. I was on and off online dating for over a year, tried different sites, met a few people – I just had to take it all as an interesting experience. I think being at the right point is really important. You have to be ok with “putting yourself out there”, it’s important to feel ok with who you are and where you’re at…then start looking. Having said this, if you give it a go and realise you’re not ready, you’ve not lost anything, leave it and go back to it in a few months.

2. Do I put my diagnosis on my profile? If you consider your diagnosis to be part of your identity then yes. If you want to be judged (positively or negatively) because of your diagnosis then yes. If you only want to attract people who understand mental illness right from the start then yes.

I did not want anyone to make contact with me based on my diagnosis i.e. “Ah, she has anorexia, I like skinny girls” – I’m not skinny so this would not work, or “Ah, I know about depression, she’s vulnerable, I’ll look after her” – I do not need looking after, nor is this a good basis for a relationship.

Nor did I want to scare anyone off just because they didn’t understand about mental illness. I like opportunities to spread the word that we (people with a mental health diagnosis) are not aliens or scary, we’re just “normal” people but I couldn’t do that if they rejected my profile before we’d even started chatting!

I took the chance that I might get to know someone and then be rejected, but online dating is about being open minded, giving things a go and just seeing what happens. I am so much more than a diagnosis, it was fun (but really hard!) putting a profile together, it helps you think about what’s really important to you, what makes you tick. I would suggest a mental health diagnosis does not need to define you, it can be something you talk about later (like a cantankerous aunt you have to visit weekly).

3. Would I date someone with a mental health diagnosis? I’d be a bit of a hypocrite if I said “no”! But it’s an interesting consideration because 2 people with mental health problems would be a lot harder to manage but we’d certainly have a lot more understanding and empathy for each other. I had to think carefully about people I came across who put their diagnosis in their profile, I wondered whether they considered it part of their identity or whether they were just trying to avoid starting to get to know people who would judge them for it. It did not stop me connecting with them per se but I knew I would only want to get to know someone if they had a similar attitude about their mental illness and recovery as I did (i.e. it did not define them). Of course, someone can become mentally ill later down the road so it’s worth considering when you get into a relationship with anyone – can I stick by this person, no matter what?

online-dating-accounts

4. Do I talk/write about mental health before meeting? I wrote some hints on my profile, such as “has been through some difficult stuff”, so people would know there was more to me than met the eye but I decided not to bring it up unless asked. I would exchange a few emails before meeting just to check out a few basics but to be honest, once the internet has done its thing of enabling paths to cross, I’d say meet asap – ultimately a relationship is in person so why put it off?!

5. Do I talk about mental health at the first date? I did not want to avoid the subject for too long, nor did I want it to be this massive “I’ve got something to tell you”. I decided I would look for opportunities to drop it in. I’m very fortunate that my job is mental health related so it’s a very helpful “test” conversation. Another way to drop it in might be to say you’ve just spend an afternoon with a friend who has depression/schizophrenia or whatever, this way you can gradually gauge the reaction and see what conversation arises. I’ve been pleasantly surprised people have often come out with “yeah, I had an episode of depression a couple of years ago” or “yeah, my uncle has schizophrenia” – obviously their previous positive or negative experience will influence how they feel about you sharing your story but there’s nothing you can do about that, you can only be honest about your experiences.

I’d always say it’s important to be open. If you’re asked a straight forward question, answer it! Living with mental illness, it’s easier to hide the truth when stigma and discrimination are rife but if you’re considering a committed long term relationship, this is not the time to keep secrets. 

6. What if I’m rejected because of my mental health? Stuff ’em – they’re not worth it. It’s painful but if you’ve done everything you can to make it work and if they choose to go, let them.

In case you’re interested, I met my husband on Christian Connection and you can read our stroy here

How do you marry someone with a mental health diagnosis?

meant to meet

Dating is tricky, but add the complication of mental illness and it’s even harder! On the road to recovery, while considering dating etc I’d decided I did not want my illness to be part of my future relationships but I also thought that dating and entering into a relationship couldn’t necessarily wait until I was fully recovered. During my recovery I dabbled in on-line dating, it was fun but nothing much to report until I met Steve.

On our first date, an informal drink at a pub, Steve and I agreed to go on a second date, out for a meal. I was desperate to look normal. One big problem – I’d not been out or eaten with anyone but my family for years. I fought with myself because I wanted to challenge myself so, in trepidation (I really liked this guy) I wrote a carefully worded email entitled “In hope I won’t put you off” and explained I’d struggled with anorexia, although most of it was behind me, I have a few hurdles to overcome. I wanted to “be normal” but asked if we could dial it down and if he could pick a restaurant where I could have a salad. That way the actually eating wouldn’t be as tough and I’d just have to tackle the eating out with a relative stranger aspect!

How Steve reacted to this email and therefore our future was in his hands:

How did you feel when you received the email? “It was a mixture of feelings. On one hand, there was the “poor girl, she’s been through so much” reaction. There was the feeling of shock, “could I handle this? How ill is she now? How to I treat/behave around someone with these conditions that I know NOTHING about (especially the anorexia)?”. Then there was the, “stuff it, I can’t be arsed” thoughts (these lasted about 2 seconds). Then, there is the fact that all relationships, especially romantic ones need a lot of hard work and graft (of which I was no stranger to, considering a previous relationship I had been in) and I was prepared to do it, because we had a right giggle on our first date (my fault!)”

“So going forward, I thought I would try and support her, by helping her take baby steps in facing challenges. I think I compared it to a marathon runner, they don’t start by running a marathon, they’d just fail, they start by running around the block. So we changed the plan. I said I’d cook some nibbles at my house and we could watch a film (hoping to take the pressure off the eating side of things). (I cremated the bruschetta, though I still think it was her fault….she kissed me whilst they were cooking!)”

I was used to taking baby steps, hence why I’d suggested a low key restaurant but Steve seemed to instinctively know that even smaller baby steps would help! I’m glad he still agreed we could eat since I didn’t want my old behaviours (of avoiding eating with people) to impact a new relationship.

What resources did you use to react to the email? “Firstly, the reason (in my mind) we didn’t have food at the first date, and only a couple of drinks, was because I was en route to visit my best friend, Tom and his family. I had no idea, she hadn’t suggested food for her own reasons. How stupid did I feel now?!”

“I was with Tom when I received the email and mentioned it to him and his wife. They didn’t really know anything about either depression or anorexia but we bounced a few ideas over together. Other than that, maybe due to the taboo of mental health, I Googled it and came up quite frankly, blank. There was a forum, where I registered and asked the question “how does one cope in this situation?”. They were as good as they could be, ramming home the idea that each situation/diagnosis was as unique as the person who has it. Totally! They also said how good it was I wanted to be with, and help this girl, I’d just met, and not in a patronising way. (The way I saw it, wouldn’t all people do this? It’s just human to want to help the person you like/frankly, want to impress)”

Not everyone is like this – many people would be put off by something they don’t understand. Steve genuinely has no idea how amazing he’s been at helping me (a relative stranger as I was then) through so much.

Why did you not run a mile? “On our first date we had a giggle together. She was (is!) also cute, and seemed keen to go one a second date with li’l ol’ ugly me. I’m not afraid of hard work, and in hind sight those first few months (arguably are the hardest of any relationship) I had lots of emotions ranging the full spectrum, but we grew through it, and learned to communicate early on. Pen and paper worked best for us, I think it started with a letter posted under the toilet door. This set, in my mind, a brilliant foundation for our relationship (if you want to know more, comment below and I’ll elaborate – it’s not anything dodgy!)”

When most distressed I’ve always struggled to talk, I don’t know why, there’s some sort of block. Steve and I realised we could write to each other – might sound odd but it worked 🙂

So, moving on, Steve and I decided we’d give a relationship a bash, this turned into marriage. We’ve dealt with a few issues relating to my health:

What’s been the hardest thing about being in  relationship with someone with a history of depression and anorexia? “Other than eating 2 entire pizzas in Italy in one sitting because she got stressed out in a restaurant?! It’s the helplessness I feel when she’s upset. We started very early on going to her therapist together, something she was keen for me to do. This obviously involved a lot of emotions, and I will never forget one of the very first ones where afterwards we sat in the corridor, her crying inconsolably in my arms for over an hour. I am a man, we are famed for wanting to fix everything, and although I’ve learnt I can’t fix everything I still want to. I’m working on it, but when I can’t do it, I feel helpless, useless, a failure. That’s the hardest thing.”

I hate that my issues impact Steve, I’d rather manage my stuff on my own and prevent it affecting other people but that’s just not feasible! Letting Steve in (to my head) has been so important to our relationship.

lsw_6450_tv

What’s your worst fear and how do you manage it? “The unknown. Frances has had multiple hospital admissions, and some very intense treatment in the past for her illness(es). I’ve not seen her at her worst in this aspect. I’ve seen little dips here and there, but never hospitalisation. I treat every new expression of emotion with suspicion, is she getting ill again? If she is, how will I manage it, what if we have a child (the grand plan) and she gets ill and goes into hospital. How will I cope with that? As Frances will tell you, I am GREAT, the world’s best, at worrying. I worry about everything. To deal with this, I have to simply ignore it. There are no answers. She may not ever get ill again (woohoo!) but she may. I can’t fix it, so I beat it down and ignore that fear, and will have to cross that bridge when we, IF, we get there.”

If Steve’s concerned, he tells me. I’m honest and mostly try to reassure him. For me, I know how hideous being ill is so I’m not afraid of the unknown, I’m afraid of the known! We are doing everything we can to avoid me getting ill again, we talk about everything. If it does happen, I know we will tackle it together.

When considering to marry Frances, did you consider her mental illness? “Yes, when I started thinking about marriage I thought about Frances being ill, being vegetarian and the fact she’d have to put up with my farting in the middle of the night (seriously, I feel sorry for the girl on this one!). I just saw her illness as another thing that needs to be thought about.”

Have you had doubts about marrying Frances? “If I hadn’t, I’d argue I wasn’t human, or honest with myself. The first few months after marriage I felt trapped. Why? Who knows. Truth be told, having lived together for a year before hand, the only thing that had changed was having a piece of paper saying we were married. That was it. So I knew it was just me being irrational. I did some research as to why I’d be feeling like this and apparently it’s very common. So I thought I’d just move on.”

“If you asked me if I’d had doubts due to Frances’ mental health? Not once. It can be a challenge at times, it can be a fear, it can be a pain in the backside. But not a doubt. It has shaped Frances into the woman she is and the woman I love.”

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How will you cope if Frances relapses? “As I’ve said before. I’ve no idea. I have our friends, my family, Frances’ family (who’ve been there before) that I can glean comfort, wisdom and strength from. I have my motorbike that always helps clear my head when I need it to. We have 2 cats who never fail to make us laugh. I know Frances has been to hospital before and has always been discharged so there’s always a light. She is a survivor, not a statistic. She doesn’t want to be ill. All of these things I can hang on to.”

“My biggest fear is about how Frances will feel about me. I will do the only thing I know how to. Be myself. But if she’s that unwell, will she still be able to look me in the face and say “I love you”? If ever she can’t say that due to the numbness of depression, then I will struggle. But I have made sacred promises to Frances, and I am a stubborn ass, and she will break her promises to me before I do (but I know she won’t, because she’s even more stubborn  than I!!)”

I know I will always love Steve but he’s right – mental illness messes with your emotions so there’s no way of knowing (if I get ill) how I will feel or what I will think. If the illness takes over, I hope he can remember that it’s not me. He has my promise that I will fight to recover and I will never break the vows I made before God.

depression nest

What advice would you give anyone in a relationship with someone with a mental illness? “Have ‘you’ time often. I go down the pub most Fridays with my friend Phil, or play xBox with/without my friend. I talk to them about things I’ve found hard. Whether it’s been that Frances hasn’t eaten because she’s feeling fat or she’s come home from work in tears every night (thankfully a new job solved this!). I’ve spoken about it all. I’ve expressed my fears, I’ve not bottled it up.”

“THE bit of advice. The bit that works for mental health, physiological health, relationships, even cooking. Communication! Talk to each other. The “you” time lets you unwind from the stress of things. But doesn’t sort it. Why do you think you are fat even though you fit into clothes I thought small enough to give to a child? Communication isn’t just about the listening, its about the talking too, and about the working through things together. As a junior software engineer, I had the phrase “root cause” rammed into my head, over and over again when bug fixing. Something is wrong, don’t worry about what is broken, worry about what has broken it. (E.g. Bike engine not getting any petrol, you don’t put petrol in the engine, you trace the fuel lines all the way back to the empty fuel tank). Maybe, just maybe, it doesn’t need fixing and just needs to be expressed and WE have to learn how we can enable that expression in an appropriate way. If it can be fixed, often, the only way to figure out how to fix something, is to approach it from a different point of view.  How do you find those points of view? Explore it, with each other, with friends, with professionals, with family, and see what you come up with.”

Final word? “If, like me 3 years ago, you have come across this blog/interview looking of help and advice and/or answers to a new relationship with someone who’s just dropped this bombshell on you (and yes, it is  bombshell the first time of the 20 or 30 times you’ll read that email) ask yourself this. Why are you entering this relationship? It’s hard work. Take the usual hard work of a relationship, and add more into it. I count myself lucky, I entered into the relationship knowing about these illnesses. I’ve had friends who have had these illnesses thrust upon them after marriage. Some are still going strong, some have ended the relationship. It effects everything. Whether it be the knowing what to do about taking meds abroad, or the phone numbers of the CMHT in your phone. To knowing how to comfort this person when they are in tears for seemingly no reason. Everything will change, and your way of thinking will change too, be prepare to get offended by Halloween costume names that normally you wouldn’t think twice about! BUT, and its a huge but, if you stick at it, learn to identify the help your significant other needs, the help you need from both them and the people around you. You build the strongest foundations for the relationship. I love Frances, through and through, and whilst I have had nightmares about what might happen in the future, I wouldn’t change a thing about her. Except maybe persuade her to eat meat, oh and let me have a dog :P”