Tag Archives: awareness

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.

Should I be glad my illness is invisible?

I have read a lot of blogs and articles with people outraged that people have no understanding about invisible illnesses. As a mental health blogger it’s easy for me to climb on the bandwagon but as usual I like to ponder things from a different angle. Mental illness by no means has the monopoly, most cancers, diabetes and most illnesses involving internal organs are on the list of invisible illness.

how-we-feel

Someone came to me the other day and told me about being jeered at in the street. He was confused about why but it made him angry and upset. The gentleman in question has a learning disability and the likelihood is that the way he was standing/walking/looking may have looked out of place/unusual, he is unaware that he looks different. Why would someone jeer at someone with an obvious disability? It’s plain cruel. It made me stop and think about how I feel about my illnesses being completely hidden.

I smile as I recall the number of times, while seriously unwell, even sectioned, in hospital, I was mistaken for a nurse on the ward. Most of the time, from my general behaviour and demeanour, no-one would have been able to tell the torture going on inside my head. No matter how unwell I’ve been I’ve always washed and dressed and tried to face the day.

chronic-illness

Sometimes mental illness is more apparent, for example if someone is unkempt, looking withdrawn or responding to stimuli other people cannot perceive. But most of the time mental illness is relatively hidden if not invisible.

Is this a good thing or a bad thing?

When I despair about having a hidden illness, am I seriously suggesting it’s better or easier when the illness or disability is on show? I have wept when I’ve watched documentaries about people with facial disfigurements, the stigma, the shame they feel and the impact this has on them day to day as they fear people staring, pointing and making judgements is totally undeserving. Katie Piper is a stunning example of someone who talks openly about what it’s like. I cannot begin to imagine how people manage a condition people can see.

Perhaps this is a blog about judgements people make.

judging-a-person

Why, whether obvious or hidden do people make assumptions and judgements about other people’s abilities and disabilities?

Why should I be afraid to park in the disabled bay? If I have a blue badge it’s because I need to park closer to the building, should it matter to other people why? The wheelchair is the universal sign for disability, it does not mean I have to be  in a wheelchair to use the space. People with conditions from autism to fibromyalgia, from COPD to paraplegia need to use disabled parking. Why is it anyone else’s business? If I have claimed a blue badge fraudulently, this is a matter between me and the authorities, not Joe Blogs Public.

if-you-could-see

On the flip side, just because someone has a visible illness, disability or condition, it seems that people make judgements about what they can and can’t do. For example, the gentleman I wrote about earlier (with the learning disability), we are working very hard with him to become more independent, which he is managing very well and it’s building his self esteem. But the people in our local shop assume he cannot do this and therefore insist on him giving them his shopping list so they pick items for him, it is well meaning but completely unnecessary and making him think he can’t do it!

The benefit of an invisible illness is that you can choose to keep it hidden, no-one else has to know unless you wish to tell them. The down side is, if people assume I’m ok, I do not get the help and support I need.

The stigma and discrimination experienced by someone with an invisible illness is due to lack of understanding and awareness that the illness exists, the assumption is, if you look normal, surely you should just get on with life?

The stigma and discrimination experienced by someone with an obvious illness is due to people making inaccurate judgements about something they think they understand but the reality is they do not understand at all.

Why do we place so much importance on appearance? We need to stop judging a book by its cover. Just because I look “normal” don’t assume I can just get on with life; if I look different, don’t assume I’m not capable.

be-curious

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

Self harm – friend or foe?

(TW) Some people may find the content of this blog upsetting and/or triggering

Self harm is a controversial subject and I’m hoping that being open will break down some of the stigma and misunderstanding.

As a fairly intelligent rational human being, I would frequently step back from my self harm behaviour and think “what the heck am I doing?!”. So, why, when in a highly emotional state did reasoning fly out the window and it become the “only thing that works”?

I think self harm is primarily about 2 things:

  • Transferring emotional/mental pain into physical pain
  • A lack of compassion/respect for yourself

I first discovered self harm as a teen when I found the world an overwhelming place. It was very superficial at first but I learnt that it helped to ease the discomfort I was feeling. I’m not sure what led me to think that it might work and to try it. I can speculate that it was linked to the natural occurrence that when we physically injure ourselves (by accident), after the initial pain, a wave of endorphines bring a sense of calm and an ability to cope with the injury. It therefore makes sense that, to produce that sense of calm and empowerment (to cope with the situation) I turned to harming myself deliberately to achieve the same effect.

Self harm is when someone intentional injures themselves. Examples include cutting, burning, hitting and poisoning. It could also be said that alcohol and drug taking as well as eating disorders bare similarities to self harm. For me, cutting was a release, I did not do it for attention, nor did I do it because I particularly wanted to. At the time it felt like I had no option.

Depression is a sinister illness that ultimately tells you that suicide is a valid option, in fact, an appropriate reaction to the given circumstances. When overwhelmed by the world and overwhelmed by these thoughts and feelings, it’s natural to look for a way out. 1 option is to follow through with a suicidal act, but if part of you is still thinking rationally, another way out is to find a way to relieve these feelings. For me, I genuinely believe, harming myself (without suicidal intent) kept me alive.

Although it kept me alive it actually represented the depths to which my self esteem had sunk. Every time, I knew I was adding to my scars, I knew I was putting myself at risk of infection etc but I cared so little about myself and my body, this was irrelevant. It provided the relief I needed but after the event I would feel guilty and angry. Although, part of me also gained something from the care I needed to give myself.

Unfortunately, for a period, for me, self harm became a habit. Instead of considering what options I had, I would turn to it like an old friend. It had worked in the past, why would I not continue?! It gave me what I needed, it relieved the pressure in my head, gave me a way to express myself. But, although a friend in the short term, ultimately, longer term it is not a helpful way to deal with feelings.

Self harm is often a way to manage our emotions on our own. Few people who self harm reach out for help and it is certainly not a way to deliberately manipulate or gain attention. The way out of self harm is to realise we are not alone. Other people can help us to manage the distress we’re feeling.

I had to learn that it was ok to feel bad. Anxiety and anger are acceptable, distress is bearable and instead of punishing myself I needed to be kind to myself. This took a long time, and I “gave up” self harm a number of times. Because self harm works as a coping technique, I was lured back many times. I’ve spent many hours distracting myself with numerous activities, desperately trying not to self harm. There is no one technique I’d advocate but overall most important factors are:

  • Express emotional pain more helpfully – sometimes this involves expressing it to either privately or to someone else, either verbally or written down. Using words is important but sometimes just venting it is important, maybe through exercise (moderate) or art, for example.
  • Learning self compassion is key. I have always known it’s right to be kind, caring sympathetic and show sensitivity to other people but I had to learn to treat myself in the same way. This does not mean I now love myself in an arrogant way, I just respect myself and believe I do not need to punish myself for being human.

I know it is hard to watch a loved one self harm, I am saddened when I hear someone uses self harm as a coping technique. But I understand how and why people do it. However, I am proof that there is a way out.

I am very sad to have so many scars but they represent a very difficult time in my life that has made me the person I am today.

For more information or if you need to talk to someone, please contact:

Or contact your GP and support team. Please do not suffer in silence.

It’s all in the mind

brain

If told you have a condition that manifests in the mind, why do some people take this to mean “you’re making it up/putting it on” or “it doesn’t exist”? And why do they then extend this to mean “you’re malingering deliberately”, “stop pretending” and “there is no pill, you’ll have to just get over it.”

I’ve just watched a video of a lady “fighting for answers” to a syndrome causing a range of distressing symptoms from limb weakness to a change in her speech. She has had numerous tests, scans etc and many doctors have concluded that the origin is psychological. But she’s dissatisfied with this answer, determined there’s something “physical going on”.  She said she just wants to get on with her life so I’m wondering why she is spending so much time going from specialist to specialist? They are all giving her the same answer, yet in not accepting the psychological origin, she’s denying herself access to the treatment that could enable her to manage her condition? Why is she (and so many other people) adamant a diagnosis of a psychological condition is dismissing her (their) symptoms in some way?

I find it astonishing that people do not seem aware the brain is the most powerful organ in the body but we know least about it. It is not surprising that it can produce the most bizarre symptoms but we do not yet have the ability to pin point how the brain is producing these symptoms.

If the brain controls our breathing, it follows that things can go wrong with our breathing that are not detectable on x-ray. If our brain controls our digestion and how our intestines moves, it follows that things go wrong with our gut that is not detectable by scans or scopes. I’m left pondering the conscious and unconscious control we have over various aspects of our body. Perhaps when our brain just does something on it’s own, without our say so, this can leave us feeling helpless.

It probably doesn’t help that many psychosomatic conditions (psychological origin for physical symptoms) are a diagnosis of exclusion – i.e. “if we rule everything else out, it’s probably that.”. Are people left feeling the end condition is less valid? If we cannot measure a chemical or see something on a scan, does that mean the legitimacy of the condition is brought into question? This should not be the case. Just because it cannot be detected and the doctors say this, they are not saying it’s not real! Perhaps some people hear the doctor saying “we cannot prove that you are ill”. But, I say, if it is experienced, it is real!

Psychological therapies are not a way of pretending everything is ok, ignoring symptoms or proving the symptoms don’t really exist. We can explore ourselves, our mind and body and find ways of coping, managing and possibly recovering from any range of issues/symptoms/disorders.

Are people afraid of the stigma that comes with psychological conditions? I fear the denial (such as that of the lady I saw in the video) perpetuates that stigma.

I speculate that if we had more compassion and understanding for psychological conditions, a diagnosis of this type would be a hopeful one and people would instead think “my mind is unwell, I need to get help to take care of it and I will be able to control or manage my condition better“. Is our reluctance to take care of our minds because it (managing our thoughts, emotions and behaviours) is harder than popping a pill? Perhaps it would be more helpful if we treated the mind and the body as one, no matter what the condition? Therefore psychological and physical treatments could always go hand in hand (not considering one as more or less important than the other).

Me, my mental health and God

I’m not one for putting my faith out there too often but in Mental Health Awareness Week with a theme of relationships, for me my relationships with God is one that I cannot miss out.

I think it’s fair to say my mental health has been rather rocky. So has my relationship with God. I was brought up a practising Christian and this has remained constant but as the chemistry within my brain has a pronounced impact on my physical health, so too has it impacted my spiritual health.

For many years, unconsciously, I placed my relationship with food and the troubles I had with my mental health at the centre of my life. Obviously things have been a lot more complicated than that but this meant I was very self centred. It is hard to admit this. Although I had God in my life, I wouldn’t turn to him for help, it was hard to imagine how he could possibly help. I often felt (despite having much support around me) that I had to fight the mental torture on my own.

Having had a powerful spiritual experience as seen in “When my mind broke my body” it occurred to me that since my mental, physical and spiritual health are interlinked and can influence each other negatively, surely, they could influence each other positively too?!

Through research, I came across Helena Wilkinson leading a day on Insight to Eating Disorders at Waverley Abbey – this lead to me attending her week long retreat on Overcoming Eating Disorders at Nicholaston House. With trepidation, thinking I wasn’t actually “ill enough” to be attending I went and it literally changed my life. It was explained that by putting God at the centre of our lives freedom from the all consuming eating disorder could be found.

nicholaston chapel

I found myself in the beautiful circular chapel, on my own, and was overcome by a compulsion to lie flat on the floor – no idea why, but I just had to do it. Looking directly at the ceiling, the simple structure, like the spokes of a wheel demonstrated  to me how simple it was to place God at the centre. This was not going to eradicate my illness but it would be displaced into one of the areas away from the centre.

God’s made himself known in other parts of my life too. Steve wasn’t looking for a divorcee my age who wasn’t sure about children and yet my profile on Christian Connection kept being offered as a possibility. We believe God really knew what he was doing when he brought us together and yet we didn’t ask him to! I also see God in the people around me. Sometimes it’s been a small gesture but it can touch me in a really special way.

When I’ve felt distant from God, I’ve found the parable of the lost sheep helpful. Even if I’m feeling abandoned and disorientated, I know the Good Shepherd will be out searching for me. The idea of God may be intangible so, for me, visual cues are important. I see God in nature etc and during my last hospital stay I put up pictures up to remind me.

lost sheep

You don’t have to be ill to know God. I don’t just turn to God in times of need, I know he carries me when I’m weak but he also celebrates with me when I’m singing and dancing.

It’s natural but how do we communicate it?

jim rohn communication

It is part of the human condition to need to feel loved/wanted/accepted. How we communicate this with each other is more complicated than you would think.

When mental illness clouds our mind, it affects the way we think, feel and behave. It permeates every aspect of life especially relationships.

I’m not just talking about intimate relationships. What happens when one half of a friendship/relationship struggles to know what they’re thinking and feeling? Although we may know (on an intellectual level) that’re we’re loved, actually communicating it to each other is important. We all give and receive love in completely different ways and while one person may think they’re communicating love brilliantly, the message just may not be getting through.

Words of Affirmation – this is where simply using words is best. Not just “I love you” but also “you look beautiful”, “I’m glad you’re in my life”, “I’ve had a good time with you today” are all ways of appreciating the other person.

Acts of Service – where doing is important. It may be tasks around the house such as cooking, cleaning or shopping. Or it may be watching/listening out for what the other person needs, when they shiver, offer them a jumper or a blanket. For some people these things come incredibly naturally, for others, it will need to be a conscious effort.

Physical Gifts – giving and receiving gifts for some people is the ultimate communication of love, whether it’s a few wild flowers picked from the garden or an unexpected new car, often the size isn’t important, it’s the gesture that matters.

Quality Time – easily forgotten as a form of communication. It’s not usually important what’s happening at the time but it’s the quality that matters. For Steve and I, putting our phones/iPads/laptops to one side is the key.

Physical Touch – while sex may be important in an intimate relationship, a touch on the arm, a hug or a peck on the check may be important parts of all relationships.

Trying to communicate with someone who is mental unwell can be very difficult; words may fall on deaf ears, acts of service go unnoticed, gifts ungratefully received and touch may be unbearable. It can also be very difficult to spend time with someone who is unwell. When unwell, the distorted thoughts and feelings lead to behaving out of character and rejecting any thoughtful gestures.

broken-communication-300x282

It’s important to remember there is still a person underneath (no matter how buried in illness). They still have the same fundamental needs – try to think about what they usually like. Try to ask the person what they need/want – this can be very tricky as within the gloom it’s very difficult to know. But if they say “I fancy a cup of coffee”, that’s a start, or if they say “I don’t want to talk”, perhaps say “do you mind if I just sit with you, we don’t have to talk” – at least then the silence isn’t awkward, it is the presence that is communicating “I care”.

When in hospital, my Mum cleaning my flat, taking my washing and a gift of contraband Pepsi Max went a long way to helping me feel loved. Quality time is a really hard one, I really appreciated visitors during my hospital stays but I would get incredibly tired and didn’t really want to talk, I had a friend who would bring a simple game to play, that was ideal! Cards and texts also meant a lot to me when I was most unwell. The odd arm around my shoulders from a nurse would also help me feel that they cared.

As the ill person, emotions and feelings can be very confusing. When I was overwhelmed with the thoughts that those around me would genuinely be better off without me, I thought the best way to communicate my love for them would be to remove myself from the world. When less unwell I had to remember that these people were hurting too and I wanted to make an effort to show them love and be grateful for them sticking by me. When low on money (as most ill people are) I would try to make gifts for people instead. Abstract love may be difficult but sticking to the facts can help. If someone’s visited, no matter how hard it had been, saying “thank you for coming” is important; if I found the words “thank you” were too hard, I would write a text.

For either the perspective of the ill person or those around them, communicating love can be very difficult but with a bit of insight as to what’s needed it is possible. It may be necessary to say “I need to hear that you love me”, an immediate response maybe “I love you” but what’s really important is follow this up with the love language that works for that person.

Discover your love language here. It’s important, not only to know how you give and receive love but how those around you give and receive love. If I’m running around doing acts of service because I express my love in that way, there’s no point in me doing any of it if my other half doesn’t know I’m expressing my love in this way and that I’d find it amazing to receive love in this way. Remember, even if you do not usually communicate love in a particular way, if you put yourself out and the other person feels love from it, that’s what matters!

Remember our love language can change so do the test often, the results may not be the answer to everything but if it sparks up conversation with those you want to communicate with, that’s great!

5 love languages

6 conundrums of online dating with a mental health diagnosis

find love

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.”

dsc_0084

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”