Don't Blame Me For What You Cannot See (mental health awareness)

A family member recently said to me that if he knew somebody with anorexia he would tell them to 'just try and eat something' and that he would ' reassure them that they weren't fat'. It came from a good place, by a good, kind person but it blew my mind how little people understand about mental health conditions. I tried to explain that when a person with an eating disorder looks in the mirror they see a completely distorted over weight person, even when their bones are visible and they are dying of malnourishment. He still didn't get it. It made me think. In the hope of gaining understanding of my own mental health issues ( I have PTSD, PMDD and the associated anxiety and depression that comes with these conditions) I've been advised many times to go down to the doctors without make-up on or following a panic attack when my eyes are all puffy and swollen. However, hearing my family members thoughts on eating disorders made me realise that even when something caused by a mental health disorder is very visible on the outside people can still fail to understand. Why is this?

An ex partner once said to me 'you're very passionate when talking about how other people don't understand your illness aren't you?'. If these words had come from a supportive place I would have taken that as a compliment but they didn't, so I didn't. For a long while he pretended to but he didn't understand any of my conditions and never had. He was trying to make me question myself, and he succeeded. These words stuck with me though and I started to see it as a huge positive instead. Yes, I am passionate about gaining understanding, and rightly so. We live in a world where the estimated number of people living with invisible health conditions is rising yearly and these people struggle daily trying to get people to see beyond their external appearance. A shocking statistic is that one in fifteen people will make a suicide attempt at some point in their lives. Mental health conditions are at an all time high pushing the NHS to breaking point as they fail to find beds in over crowded and under funded psychiatric wards. There has been so many cases of suicide recently in the celebrity world and finally we seem to be discussing it more openly yet people are still shocked when the next smiling, 'happy' reality tv star/actress/singer takes their own lives. Depression and anxiety are illnesses the same as any other serious illness but the disease is located in the brain, out of sight, not on show.  Cancer kills people but how can we not understand that when it ends in suicide so does depression. We wouldn't dream of telling someone to think their cancer away so why is it deemed acceptable to tell a sufferer of depression to 'think of something nice' in order to make themselves well again or to 'switch it off'?

Apart from choosing what we put into our bodies to nourish them we have little control over our own internal organs. If someone has a problem with the way their stomach is functioning we don't question or blame them so why do we question people who have an illness that is simply caused by the way a different organ in the body is functioning? why do people assume that the brain is different? is it because we use this organ to think so people believe we can simply think it better or imagine it away? The brain consists of three main parts and it is such a busy organ with so many jobs to do it's no wonder it gets overwhelmed. I try to imagine it as a huge version of Birmingham's spaghetti junction with cars zooming all over the place. Chemicals produced within the brain (our major organ) are one of the main causes in the majority of mental health issues. Our moods are affected by how these chemicals are produced, the amount that is produced, how they are regulated or our sensitivity to these chemicals and we have no (or very little) control over these factors. Of course, exercise, relaxation and thinking positively can all benefit our mental health but in the same way that they cannot cure cancer, they cannot cure depression. So it does make me angry. It makes me angry every time someone questions what I have to be sad about (when sad doesn't even come close to the feelings created by this illness), or when someone says suicide is selfish, or when people tell me to 'just think positive'. A person with depression doesn't want to feel depressed in the same way that someone with a bad migraine doesn't want a bad migraine. The migraine sufferer can take tablets to ease the migraine but ultimately they have to ride it out and hope that it eases off. The same applies to a person with depression yet the medication doesn't always work.

I have tried many times to describe both anxiety and depression to people who have never experienced it. With depression I use this description a lot. If you are in a bad place with your depression you could sit in front of the tv holding the winning lottery ticket and still feel nothing. Of course, unless your depression is caused by financial difficulties then all the money in the world wouldn't make any difference to your depression but I am trying to say that something exciting, a dream coming true, wouldn't make any difference to your mood in that very moment. Another example is your perfect wedding day that you have imagined your whole life. There you are standing next to the love of your life and everyone is smiling and happy and beautiful yet you stand there feeling lost, empty and hollow.  Imagine how this feels and the guilt and all other associated feelings that stem from feeling like this on such an important day and yet it has nothing at all to do with the person you are marrying or the ceremony but everything to do with your illness and again you cannot control it. Depression is an illness not just an emotion. It is not just 'feeling sad', we all feel sad from time to time, we do not all feel clinically depressed. Depression is extreme sadness, extreme low mood, emptiness, worthlessness, hollowness, fear, self loathing and more and it hides itself well which is why we are so shocked that it takes the lives of comical, seemingly happy people such as Robin Williams. I have actually found that a very high number of people with severe depression are extremely creative, artistic or effervescent people that we perceive to be extrovert. This form of depression has been labelled as 'smiling depression' where the person appears happy while internally suffering with deep depressive thoughts. They wear their smile like a mask but it is simply a defence mechanism for them to carry on their daily duties. Suicide is a particular threat for these individuals because unlike those suffering with classic depression (and the associated lack or energy and motivation) they have the energy and ability to plan and follow through. This is why so many celebrities whose careers are built on entertaining shock us with their sudden suicides.

When it comes to anxiety it seems to be harder to explain but easier for people to understand and this may be because everybody worries to some extent. I trawled the Internet in search of a good description and here are just a few I found. One user described her generalised anxiety disorder as if she tripped and the moment where you don't know if you're going to catch yourself or not is how she feels all day long. Another similar description was the feeling you get when you tap your pocket to get your wallet, and it's not there but having that feeling constantly and being unable to get rid of it. Anxiety to me is like worrying about every single possible thing, all at once. It is when your mind imagines the worst outcome to everything and replays all the distressing things that have ever happened to you over and over again like a bad song stuck on repeat. It is thousands of questions in your head at once and yet there are no answers. A lot of anxiety sufferers have also experienced panic attacks. A panic attack is a sudden wave of intense overwhelming fear that can strike out of the blue, without any warning, with no clear trigger and can even occur when you are relaxed or asleep. It is charactised by its debilitating intensity and symptoms include but are in no way limited to, a pounding heart, shaking, feeling detached from your surroundings, hyperventilating (over breathing), feeling light-headed and believing you are going to die or go crazy. When I have them I can feel completely detached from my body and I am physically unable to speak. I feel like I have fallen down a deep hole I can't get out of then the crying starts and gets so intense I struggle to breathe. I see no way out and I feel like I am literally losing my mind. After the panic attack I feel exhausted but I do feel some relief at letting out the emotions.

I have lost count of the amount of time friends and family have told me to 'just stop thinking about it' when I am worrying excessively and my anxiety is severely affecting me. The best thing I have found to say to people is to try 'the pink elephant experiment'. For the next 30 seconds you can think of anything you want to but whatever you do don't think of pink elephants. Did you manage it? I often take it a step further and this helps them understand not only the inability to switch off unwanted worries/thoughts but also the fear anxiety creates. Now, Imagine you are in the house alone at night and you know that an escaped murderer has just broken in and is carrying a knife. You must not think about that murderer, imagine he isn't there. Impossible, right? Well that is anxiety at its worst. Extreme fear and unwanted thoughts you can't get rid of. In psychology this phenomenon is called the 'ironic process theory' whereby deliberate attempts to suppress certain thoughts actually make them more difficult to ignore and more likely to surface.

Anxiety disorders are also caused by hormones that are released in the brain. Anxiety becomes a problem when areas within the brain either function inappropriately or fail to function at all. This can be caused by an abnormal fight or flight response which is a physiological reaction that occurs in response to a real or perceived threat. The release of hormones such as adrenaline and cortisol prepare the body to react to an extreme danger and it is believed that the fight or flight response was developed within the human body when our ancient ancestors were around. The scene I always remember being told about was a caveman facing a hungry tiger. What's does this caveman need to do in order to survive ? He needs to either fight it off or run away and in order to fight or flee the body must prepare itself for action by producing hormones that create a whole host of symptoms. In this modern age we are less likely to be faced with a tiger but we still encounter real or imagined threats or stressors and our bodies respond in the same way as if a tiger were in front of us. Now, if you have an anxiety disorder your fight or flight response is malfunctioning in a way that causes you to experience the effects of the hormone release but without a justifiable cause. It is basically triggered when no or very little danger is present. Using MRI scans scientists have shown abnormalities within the brains of patients with both Major Depressive Disorder and Social Anxiety Disorder, but not enough research has been done yet and it is still on going. As with depression it is the brain, an organ, that is not functioning correctly and yet again sufferers are made to feel weak for struggling to control it.

I realise that I have to accept that if someone hasn't experienced serious mental health issues themselves then they will struggle to understand yet it is still frustrating. A bit of reading up, of listening to people's stories, of asking questions and of opening your mind is all it really takes. If you have time to watch TV, or to read a newspaper, to browse Facebook or talk to someone on the phone, then you have time to learn about mental health. YouTube is full of information as is Google. Research and love. It is just two things but it could save someone's life, especially if you are the one that they turn to for support. Take care people and thank you for reading. X

The 'Don'ts' of Chronic Illness

Don't ever think that my tiredness is anything like the tiredness you experience. If you have ever had the flu (and I mean the real flu, not man flu or a heavy cold, but the kind of flu where you would literally not have the energy to walk into your garden and pick up a £50 note), then maybe you will understand a bit more. The headaches, the sore throat, the aching limbs, the weak muscles, I could go on. Imagine having the flu and trying to live your daily life whilst also battling depression and anxiety, and the other physical problems I have. 

Don't ever compare my illness to other people's different illnesses as a way to highlight the fact that I don't push myself enough. I push myself every minute of the day from the moment I open my eyes. I push myself to get out of bed despite the fact I feel worse than when I went to sleep the night before, despite the fact my entire body hurts, despite the fact my throat is swollen and I feel like I have fallen down a flight of stairs and not like I have had 8 hours sleep. I push myself to get dressed, I push myself to talk to people, to fight through every hour of pain because I refuse to give up. Some people with my illness are housebound or have to use a wheelchair and if I push myself too hard I could end up like that and the thought scares me terribly. My illness goes through ups and downs and relapses. I try to avoid relapses but I do tend to do too much especially when I am anxious or depressed. Have you ever considered that it's not even about pushing myself to do stuff in order to 'make the most of life' ? It's worth knowing that when I say I can't do something then I sometimes I physically can't do it. It's all well and good saying I should 'make' myself come out because it will do me good but if I have overdone it or I am having a flare up I might not even be able to move  so getting out of the house would be physically impossible. When people say 'it's about thinking positive' or 'there is no such thing as can't' it feels like they don't understand at all. It feels like people underestimate the pain, the exhaustion and the weakness. Twelve years ago I didn't push myself like this and spent nearly every day in my pjs, lying on the sofa watching TV.. so I've come a long way but I have had to sacrifice my health because of this and my symptoms are actually far worse now than they were back then. 

Don't assume that I am ignoring you because I don't answer the phone or I haven't responded to your Facebook messages, to your texts, or to your whatsapp chat. Sometimes I can't cope with all the information because it overwhelms me. I struggle to explain how I am after writing a long text message/email or having a phone conversation. When I am writing , either on an electronic device or on paper, my eyes blur, my hands ache and I get shooting pains down my fingers and neck. I was diagnosed with repetitive strain injury before touch screen mobiles came out. Typing on my mobile back then actually caused it, so I have to be extra careful. I also can't rest as I know I have to keep up with the conversation so my anxiety ends up being aggravated. If I spend too long staring at the screen whilst concentrating then the next day my vision is affected and it's like I'm looking through slightly frosted glass and I have pain in my actual eyeballs and all over my face. I have had to have lengthy, important phone conversations in the past and afterwards been literally unable to talk from exhaustion and throat pain and so weak that I have burst into tears and almost collapsed. This can also happen during conversations with friends which is why I avoid phone chats. A phone chat is just as tiring as an actual face to face conversation. 

Don't forget to ask me if somewhere is too loud or busy. One of the things that drains my energy and exacerbates my exhaustion is noise, social interaction, different lighting, certain smells, and any other kind of stimulation. Busy places will tire me out far more quickly and usually just looking at a large crowd of people can totally exhaust me. I am hyper sensitive to smells and sometimes certain smells can make me feel sick or make me dizzy or give me severe headaches. Often these may be odours that other people don't notice or can't even smell. Lights are very very disorientating especially energy saving light bulbs, and lights in hospitals, shops etc. If I have to sit opposite a window that has light coming in it will affect me very negatively, especially if I'm talking to you and you are sat in front of it.  When I have an hours session with my therapist I am unbelievably tired due to the long conversations but also due to the horrible lighting. I come out and I struggle to speak and my eyes feel blurry and heavy. Lights are the worst, they make me feel physically sick. I'm finding it difficult to even explain this one.

Don't get angry at me because I have to know our dinner or lunch plans in detail, specifically what time we are eating. A lot of the time (markedly worse at certain times during the month), if I haven't eaten for a few hours I get shaky from low blood sugar (reactive hypoglycaemia), and struggle to even hold a knife and fork. My words slur, my eyes blur and I feel disoriented and confused. I have even been accused of being drunk. It's embarrassing for me but it's such a scary feeling because it can be dangerous and it's the main reason why I don't cook for myself.

Don't moan at me because I struggle to make plans and when I do they are like a military style operation. I don't know how I am going to feel next month, next week, tomorrow or even in the next hour. My illness is unpredictable and erratic. This is probably one of the most frustrating parts of chronic fatigue because it kind of takes the fun out of things that are supposed to be enjoyable. Spontaneity is exciting but it is so hard for me. I need to know where we are going, what time we will get there and back, what we will be doing when we are there, what I need to wear, if there is lots of places to sit down and will it be noisy because like I have already said, noise really affects me.

Don't forget that although my illness doesn't define me, it does restrict me, and I hate that. I used to be really active so that just adds to the frustration.

Doing more than one thing at once is exhausting but this doesn't mean I don't do it. So don't be surprised if I struggle to listen to you while I am typing on my mobile or if I can't follow a sat nav because I am taking in all my surroundings as we whizz past them in the car, whilst the radio is also on in the background.

Don't hide my updates on social media because you think that they are too negative and they 'bring you down'. Reality check: life can be shit at times, if you want sickly sweet sunshine, rainbows and happiness, watch Disney. If you don't want to read my updates then 'unfriend me', both online and in real life. The world is so full of fakery and all people do when they only post positive, sugar coated updates is add to this false world. As Ronan Keating once sang, 'life is a rollercoaster'.

Don't always believe me. I know that sounds crazy but I do lie. When you ask me if I'm getting tired or if I want to go home yet I will often deny how bad I am feeling because I don't want to 'give in' and most importantly I don't want to ruin things for you. I want you to enjoy it when we go places, I don't want to be a killjoy. I feel like I am letting you down if I can't do all the things that you want to do or see all the things you want to see. So I'll often carry on and deny that my legs feel like jelly and I'm struggling to stand up or even see properly. I might say I feel bad but I probably won't say just how bad. 

Don't forget to tell me if you have a virus and we are supposed to meet up. I have a low immune system and if I catch what you catch it will take me a lot longer to get over it and it will cause a flare up of my other symptoms.    

Don't forget that what you see is probably not what you get. I usually end up on the sofa or in bed when I have spent time with you. This is because I have chosen to use my energy on having fun with you. If you want to understand more then research the 'spoons theory', because this explains how people with chronic pain and illness cope each day. I have a limited amount of energy each day and I usually pace myself as much as possible, resting in between activities. I don't do this as strictly as I should which is why the occupational therapist discharged me at the hospital. They wanted me to time EVERY single activity in my day and stop each one just before I got tired or felt pain, and I refused to regiment my life like that because to me that wasn't a life.  However, if I meet you for dinner plans I have probably just woken up from a long sleep or rest and getting ready has triggered all my symptoms again. So excuse me if I am flustered.

Don't judge me on what I did yesterday or what we did together last week or last month. Like I've said, every day is different. So we may have walked through town last week but today I can't walk as far or walking will affect me a lot more. A walk that is short for you is not short for me on a bad day. It's like that saying, 'try walking a mile in someone else's shoes'. 

Remember that if my parents didn't do everything that they do for me I would probably see you a lot, lot less and we wouldn't do a great deal. If I cooked, cleaned, tidied, drove etc then I'd have no energy to leave the house. For everything that they do for me I am truly grateful. I am also truly grateful to have you in my life and for the fact that you are reading this and trying to understand. I know at times it is difficult to deal with or you don't know what to say, but just being there and being you is what makes me happy.