Depression

3 Years On, 3 Years of Managing

Today marks 3 years of suffering from anxiety disorders and being unable to work or leave my house much. I’m never quite sure what to write in these posts and this one is particularly difficult to write as I’ve been so up and down over the past year, there have been high points where I’ve been able to go out on my own for up to a couple of hours whilst taking photographs and there have been real low points where I’ve been unable to leave my flat for days on end and have had to cancel visits or leave early because I’m simply not coping. In some ways I feel stronger and a little more able to cope and manage, I’m not sure what’s caused this but I do think it has a lot to do with how long I’ve been experiencing these symptoms for, after a while you do get more used to it and while you’re still suffering every day, you learn to sit with that for longer and put up with it more before it gets to the point of overwhelming you. I also feel though that I’m much more all over the place and less stable, in some ways this is good because it means the good bits are a bit better but it inevitably means that the bad bits are often worse too and more unexpected. I wrote recently that I’d been really struggling since New Year’s Eve and that lasted nearly 3 months, I think I’m finally coming out the other side of that now and tentatively I’ll say that I think I’m feeling a bit stronger and more capable again but my IBS is still kicking in every time I get stressed or have to go out anywhere even though all of these places are very familiar to me so I’m certainly not back to my pre-Christmas level of functioning yet. I think I’m gradually going off the idea of analysing a whole year at once, while it’s important to look back and to see how you’re doing in comparison to various points in time, I also find it unhelpful because a year is a very long time, especially in the world of a sick person and it’s easy to generalise and view the whole year as being worse or the whole year as being better when this wasn’t actually the case. I prefer to be realistic and break it down a bit further and that has helped me see that certain aspects are a bit better and certain aspects are the same or worse and that these often change.

So where am I at now? I’m starting to get a bit stronger and I feel a bit more resilient, though ask me on a bad day and that sure as hell won’t be the case. I often wonder how realistic my view is because on good days I wonder why I’m at home, why I’m not working and whether it’s all imagined and then on bad days I don’t even know how I get out of bed, let alone run a blog, manage any deadlines (though I’m pretty ace at missing most of those I set myself) and actually make any meals at the right time. My view of the world and myself is very changeable and very much affected by how I’m feeling at the time. Generally though, I’m pushing myself really hard and doing my best to keep challenging the anxiety and live as normal a life as I possibly can within its confines. I struggle a lot with people not understanding and I now feel like I have to explain many of my actions or not show everything because so many people think that doing something once means it was easy, fun, or that I can continue to do it. I can’t stress enough how unhelpful or inaccurate this is. When I do things outside my home they’re rarely fun or enjoyable, I have to focus the entire time on keeping my breathing under control, I need a lot of reassurance and my thoughts are always racing, this doesn’t mean I don’t have a good time but it does mean that what you might see isn’t usually representative. I’ve become a master at covering up how I’m feeling and disguising how hard I’m finding things, I’ve spent 3 years trying to manage the panic symptoms so that I rarely have panic attacks whilst out but I’ll often have them when I get home because I’ve forced myself to hold it together for too long and that energy and fear has to come out somehow. It’s exhausting feeling like this and then being misunderstood and assumed to be “better” because I’ve done something once. 3 years of being ill has taught me that doing something once, even 10 times, doesn’t mean it gets easier, it doesn’t mean I can do it every time and it doesn’t mean that it won’t get harder again. Anxiety is very random, it’s very changeable and it usually does what you least expect. Instead of telling me that I’m better or telling me that it’s great I’m going out more, perhaps you could ask how I’m feeling, ask how I’m finding it and what I’m experiencing, rather than assuming, or worse, telling me how I must be feeling. If you look closely enough, you’ll see the signs of anxiety and stress, you’ll see that I’m stiff, my shoulders are up, I’m very jumpy, my eyes are wide and scanning the room, I’ll rub my hands together and rub my legs hard to try and get out some of the nervous energy and I’ll dig my nails into my palms. The signs are there but I’m very good at covering it up by smiling and joking and pretending as hard as I can that it’s not happening and that I’m in control.

Over the 3 years I’ve been ill, I’ve learnt a few coping strategies, these have varying levels of helpfulness and success but I do have more of them to try now than I ever have. Keeping my hands and my mind occupied is really important, colouring and crochet are great for this as long as my hands aren’t shaking too much and I regularly use both to help stay calm. I have grounding stones, 2 bright blue glass pebbles, that fit in the palms of my hands that I grip onto when I’m out if I’m feeling really stressed and they’re nice and flat so I can easily put them in my pockets and no one will notice. I also try not to bite my nails so that I can dig them into my palms if I don’t have the stones. I also like to bake though I usually need a bit of moral support as my confidence isn’t very high but I love being able to make tasty things and it’s a great distraction. My newest coping strategy, as mentioned in a previous post, is photography. This is mostly great for my anxiety and helps keep me calm and focused on the present and means that I stay outside for longer (more on the benefits can be found here). However, it brings its own anxiety with it, for a start, I can’t bear being watched or looked at by strangers and having a massive camera hanging round my neck or bending down to take photos means that people notice me. It’s also difficult because I want to be able to post my photos on social media when I’ve managed to go out, I’m really proud of some of the shots I’m taking, the things I’m noticing and the things I’m doing but as mentioned above, this can elicit responses from people wrongly thinking I’ve improved or that I’m finding it easy. Sadly, this isn’t the case and while I am pushing myself harder than ever and photography is making me that bit more determined, I’m still really struggling to go out and this ranges from being scared of my door being knocked on to occasionally being able to go out alone for a couple of hours, and anything in between. I cannot plan trips out without huge anxiety for days ahead of time, often I can’t follow through with plans and even when I do, I struggle throughout. Having to go through this suffering, dealing with these symptoms every single day for 3 years, and then having it simplified into “yes, but you did it” the few times I do succeed, is very difficult to manage and to tolerate. I don’t want to be negative but I also don’t want people around me to force positivity onto me. I’m so grateful and proud every time I set foot outside my front door, whether that be to take the rubbish downstairs, or to go on a trip out, but I still have to deal with the constant stream of fearful thoughts, the flinching, the feelings of being totally overwhelmed whilst fighting to be outside because I feel like I’m going mad indoors and just have to get outside and see something other than brick walls and my possessions. Trips out aren’t split into good and bad for me, they’re a mixture of both every time, I absolutely make the most out of them and focus on the positive and rarely even talk about the bad bits (except whilst blogging) unless someone tries to force positivity onto me and make out that the whole thing was sunshine and rainbows. When I’m not dismissed you get the full picture, you know that I struggled but that I’m proud beyond words, that I’ve now got photos of every trip out, every little thing I noticed from ice-covered litter and animal bones to birds, flowers, sunsets and even deer! Those are the things I want to be able to share, to be able to show off but that I usually feel unable to do with most people because it feels like I’m not believed when I receive comments about how much better I appear to be doing.

However, in the spirit of pushing myself and trying to combat the anxiety I’ve decided to post some of my favourite photos below because I really am proud of what I’m achieving and how hard I’m trying and I don’t want to have to hide those things because of the fear of misguided comments. I’m really hoping that over time I’ll stop worrying quite so much about what other people think though this is very ingrained in my personality and something I’ve always struggled with. I wish I could just brush off what other people think and say and just do things for me but sadly, that’s not how Social Phobia works, it’s a condition that means that every confrontation, every interaction, every glance or even future event has to be analysed, worried about and obsessed over, I try to just think ‘sod it’ but I just can’t, it matters so much to me to be liked, accepted, and above all else, believed. I really am going out on a limb every time I post photos from outside my flat, it might not seem like a big deal but to me it’s akin to posting half-naked photos of myself, I feel exposed and it means that people can, often accidentally, attack me in the most damaging ways. I’ve always strived to tell the truth, but telling the whole of it is a real struggle for me. I never, ever lie but I often don’t feel able to tell the whole truth because I’m often not given the time or space to fully explain a situation and then assumptions are made that I’m improving or achieving more than I actually am. I probably sound completely mad and totally paranoid but I’ve been receiving these comments throughout my life, from the age of 9 when I first got ill with M.E/CFS and my biggest fear and hate in life is not being believed so for me the stakes are really high every time I open up enough that someone could disbelieve me.

I hope you’ll all enjoy my photos, I’ve loved taking them and am really pleased with them. One thing the anxiety is great for is anxious vision, or as I call it “anxious eyes”, it means that I notice everything around me and I know that’s making me better at photography and noticing subjects to capture. I’ve had my camera for 2 months and have already taken over 5000 photos, a huge chunk of which have been through my lounge and bedroom window of lots of birds that visit the trees outside our flat, I couldn’t be more grateful for them on the days when I can’t get outside and I’m regularly known to take 1-200 photos of a pair of birds in under an hour in the hope of getting a perfect shot. It’s a great distraction and it’s lots of fun. 3 Years On, 3 Years of Managing.

Just Do It.

Before you ask, no, this isn’t a post about Nike or indeed anything sporty but then knowing me, you probably guessed that! Just Do It is what we all need to do when we’re considering whether to do something but aren’t quite sure whether we should or not. Just doing anything is not something that comes naturally to those of us who are anxious and being told to just do it or just give it a go is truly unhelpful, so why am I saying it?! Hypocrite? Maybe. But go with me on this. This is a specific Just Do It.

Are you wanting to compliment someone or thank them for helping you in some way but aren’t sure whether to do so? Just Do It. Are you considering emailing a blogger or commenting on something that matters to you? Just Do It. Are you wanting to tell someone you care about them or wondering how they are? Just Do It. You might be worried that you won’t express it well, that they’ll think you’re silly or that it won’t matter to them if you do it or not, I often receive messages from people saying just that, that they’ve probably not explained properly, or I must hear it all the time, or that it may not mean much. I think this too but what a lot of assumptions we all make about other people’s lives. When people message me they seem to assume that they’re one in a huge string of people that I get emails from or that they’re the latest in a long line of people who’ve commented but this isn’t the case. Even if it were, each message would mean exactly the same to me, but the truth is I receive about one or two messages a week from people thanking me for my blog, telling me the difference something I’ve done has made to their life, or telling me how much they love a book that I’ve recommended. I can honestly say that these brighten my life for hours, if not days!

Blogging is very odd, it’s faceless and feels quite anonymous even though I’ve put a face to the blog a number of times and you all know that I’m Lucy, 26, with various mental illnesses and an unhealthy obsession with colouring and buying pencil sets! But I don’t know all of you. I don’t know who’s reading, who you are, your name, your life story, your conditions, your hobbies, what mood you’re in when you’re reading this, what your reasons are for reading this, I don’t know anything about you. Writing a blog is like writing a message in a bottle and setting it off on its journey into the sea, you just write and hope for the best. I’m always a little nervous that it might reach someone on a bad day and make them feel worse, that they might follow my recommendation for a book but then hate it or that my experience may be so different from theirs that my description angers them enough that they tell me. You can probably see now why receiving messages of thanks are so important to me because I get to know a little bit about one of my readers, I hear that you’re struggling too, that I explained something you couldn’t, that you now feel less alone, that you’ve found another wonderful book to colour in or you’ve found the perfect pencils for your aching hands. Hearing from readers of my blogs makes all of this worthwhile, it gives me a purpose and spurs me on to keep writing.

It’s hard to send these messages sometimes. I often want to get in touch with people who I miss or haven’t spoken to in a while or even get in touch with artists to thank them for their work and I rarely ever Just Do It because I feel scared, worried I won’t get a reply, worried it’s silly or that it won’t mean anything and many more random worries. But, I try to think about how I feel when people send me these messages, when a friend who I’ve not heard from in months or even years gets in touch to see how I’m doing, when a reader contacts me or when someone sees something that reminds them of me and gets in touch, just because. I can safely say that I’ve never wished they hadn’t, I’ve never received a positive message that I’ve felt was silly or wasted. I’ve appreciated every single one. I’m sure most, if not all, of you are the same. Negative thoughts or opinions are very welcome to be kept to ourselves but positive things and feelings should definitely be shared. I don’t know if it’s a British thing or if it’s universal but we’re far quicker to criticise or comment than to compliment or thank others. It’s just not what we do. We suck at taking compliments too, if someone says we look nice we’ll tell the person it’s good make-up or a great hairdresser or a flattering dress that was a bargain. It’s never because we look nice that we get compliments, it’s because of what we’ve bought to alter our appearance. It’s quite sad when you think about it. Today for example, I received a wonderful compliment about my photography, I don’t think much of my photography right now so before I’d even finished reading the comment I’d already decided that it was very kind but not true, that it was all luck and nothing to do with me. In writing this post I’ve realised this simply isn’t true. This next bit would probably sound big-headed but remember it’s being written by someone with self-confidence through the floor who doesn’t often believe they have talent. My instinct to this lovely comment was to dismiss it as either luck that I got those shots or that it was something anyone could have done, but I’ve had a proper think and I’ve realised that yes, luck does have a part to play, especially in nature photography, you can’t take a photo of something that isn’t there, however, thanks to my anxiety, I do have a great knack for noticing birds that others wouldn’t, I have patience to wait and take heaps of photos knowing that just a handful will be usable, I have great vision which helps me notice the slightest of movements and I’m starting to be able to identify flight patterns and songs of birds so I can work out if they’re things I want to photograph or if it’s yet another pigeon! These things are taking time and effort and, I’ll reluctantly admit, skill. I’m certainly not going to be able to sell photographs any time soon but I can see that in just one month since getting my camera I’m already improving and learning loads and that I need to take these compliments rather than just putting it down to luck or the camera I’m using.

You might now be starting to see why it’s so important to Just Do It when it comes to complimenting people or thanking them. Many of us with mental health problems have low self-confidence and low self-esteem and we often don’t believe in ourselves or think very nice thoughts. While we may not believe things from others, or it may take time to sink in, it’s always lovely to hear those things because eventually it does start to sink in and we realise that maybe we aren’t so bad and maybe we are making a difference or do have some good qualities. Remember all of this next time you’re considering sending a message and Just Do It. It won’t do any harm, and you might just make that person’s day, certainly whenever I receive such a message it really does brighten my day and often leads to me crying happy tears because I don’t really think much of what I’m doing and it’s wonderful hearing that I can make such a difference even to just one person who’s struggling. No matter what it is that you’re thinking of sending, even if it’s been a really long time since you were last in touch, stop thinking, get writing and Just Do It.

One Step Forwards, Two Steps Back

The time has come again, where my condition has changed. It hasn’t improved. I’m reluctant to say that it’s got worse but I’ve been consistently struggling with more things for the last month so I guess I’ll have to face facts. One aspect has been improving and I’m incredibly grateful for that, I’m coping a little better with being outside. It’s quite random as to when I feel better about it and I’m never quite sure how much of it is that I’m so used to this feeling of panic and anxiety that I’m now not noticing it quite as much when I’m out, or whether the sheer desperation to be outside, to be back in the real world is giving me the motivation and drive to push through the symptoms harder than ever before, or if the symptoms actually are a bit less. Either way, I’m coping better and staying calmer when I am able to go out. Something that is really helping with this is photography. Ever since I started trying to push myself back into going out when I first got ill and became housebound I’ve been using my mobile phone to take pictures of things I like when I’m out. When you’re anxious and on high alert, you notice a lot more about the world around you than most people do so I’ll see the slight movement of a bird landing or bees pollinating flowers, this is exhausting because I’m trying to process so much information so I always come home completely exhausted and usually feel quite rough for the rest of the day but it’s worth it. Photography is helping because I have a goal and it also breaks the walk down into smaller chunks because I’m just focusing on the next photograph rather than the whole walk. I also have to keep my breathing under control or I just get a blurry mess, especially when I’m trying to use the mammoth zoom on my shiny new proper camera and get it to focus on a particularly flighty bird. It takes a lot of focus but looking at the camera screen also helps me escape from the heaps of thoughts that normally fly through my head and I’m finally able to use the heightened hearing and vision to my advantage, it’s making me a great bird-spotter! While this is proving very useful, it does come with its own challenges, having a whopping great camera attached to me does make me feel like I’m drawing attention to myself and I have very very low confidence at the moment so this is really hard to deal with. I constantly remind myself that it’s just a camera and people will obviously know what I’m doing and possibly even be jealous, but it still makes me very worried and paranoid about what they might be thinking.

As for the negative bits, well those have just been a kick in the stomach. For a few months now I’ve been coping much better with planned visits to my Dad’s and my Grandparents’ houses and I’ve been settling really quickly once I’m there but ever since New Year’s Eve when I had a big panic about going out for absolutely no reason, I’ve been really struggling again and my IBS is back with full force making it doubly hard to even say yes to any plans let alone to follow through with them. Even the thought of having to go somewhere at a specific time makes my stomach knot now. It’s just horrible. I had done so well getting myself to that point and finally becoming more comfortable and it feels like such an enormous step backwards and it’s even more frustrating that I don’t know why it’s happened or what triggered it. Even when I think about going to someone’s house, there’s no specific thoughts about what I’m anxious about, I just have this really intense feeling of dread and a knotting feeling in my stomach and if it lasts long enough I get an IBS attack because of the stress.

On top of that, I’m also getting pretty bad health anxiety. Bad to the point where I start getting imaginary symptoms of illnesses that I can’t possibly have come into contact with and I’m now getting very fearful of being around people who might be contagious with anything, even a cold, because they make me so unwell because of my other underlying health problems. Again, it’s making me really anxious and makes me not want to go out anywhere or touch anything, I’m back to being overly worried about getting food poisoning from foods that I know are cooked and uncontaminated and yet my head still makes me ask questions about it and check things are hot enough and aren’t pink, my poor boyfriend must be going spare being constantly quizzed, he’s a chef, his job is to cook all day every day and not make people sick and yet I still worry, just in case. It’s not a trust issue, I’m worse when I’ve cooked stuff because I don’t have much confidence or belief in my ability, I just seem to be permanently switched on to worry mode. Again, I have no idea why, nothing specific has happened to cause this, just 3 weeks ago I had a cold and while it wasn’t nice it really wasn’t that bad and yet I’m really frightened of getting another one.

For those of you who know me in real life, please don’t stop inviting me to things, I’m desperate to be back to how I was before Christmas even and able to reliably say yes to plans at your house, but please understand that I may not be able to say yes at the moment or may have to cancel last minute. Even writing this is making me feel sick and anxious because I just feel like I’m letting people down. I’m so worried that my family and friends will think this is about them or something they’ve done or not done and it truly isn’t. I have absolutely no idea what’s caused this and it’s doing my head in that my condition changes so randomly and unexpectedly, it’s really unsettling. In many ways I wish my condition was constant because I’d know what I could and couldn’t do and could work on improving those things instead of working for months and months to get myself to a slightly higher level of functioning, only to have it taken away again for no reason and have to start from scratch again. I never have given up and I never will but my goodness is this testing that resolve. It seems like no matter how hard I try it’ll never let up, I’ll never actually get back on my feet without the carpet being pulled from under me again. I can’t even express how much it hurts to be back to struggling this much to go to places and see people I’ve known my entire life. I hope that if they’re reading this they believe what I’m saying and that this truly is just a random change in my condition and nothing that I or they have done. I love visiting my grandparents and helping look after my Grandad and spending time with them both, I had a lovely Christmas with my dad and his partner and her family and for the first time in ages I felt settled and not at all on edge and then under a week later I was having a panic attack and just feeling like my thoughts had been taken over again. I managed to pull myself together and calm down with the help of phonecalls to two family members and actually get to my dad’s but I just couldn’t stay calm, I kept feeling more and more on edge and unable to cope, with what, I don’t know, but just this rising feeling of not being able to cope and soon after midnight I went home and spent over an hour in floods of tears because I just couldn’t hold it together any more. I got in the same state a few times over the following two days, a great way to start a new year eh?!

Since then, I’ve tried to just think it was a blip, I really thought it was at first, I hadn’t been sleeping properly and Christmas is usually a tricky time for me so I thought a few good nights’ sleep and a bit of calm and distraction and I’d be back on track, but I’m not. I’m over-emotional again and randomly crying or feeling totally overwhelmed, I can’t keep still and feel bored most of the time, I often feel angry for no reason or like I want to run or jump or scream. I’ve got so much energy inside me and yet I can’t focus on anything for more than a few minutes most of the time, I can’t plan to save my life at the moment and then I get totally overwhelmed by all of the tasks I have to do or the mess around me and I don’t even know where to start with sorting it out. I feel intensely lonely when Joe’s at work and I find the computer and even my phone really intrusive and I regularly feel like throwing them out so I don’t have to deal with so many FB notifications or crappy emails or spam calls. I desperately want to be left alone, to have contact on my terms rather than being constantly contactable, but I also hate being alone, I can’t bear my phone being switched off because I get so anxious without it, it’s a real Catch 22! So currently, I’m trying to keep busy, as best I can. Joe’s helping make meals for me and helping me plan them to make sure that I eat properly on the days he’s not here. He’s helping me organise stuff so I know a priority order for my reviews otherwise I just do random tasks on loads of them and none of them end up ready to be uploaded, and I’m trying to get on top of the chores in the flat so that they’re easy to do and more manageable, even on my bad days. It’s really hard being this incapable. I’m good at seeming ok, readers of my reviews have very little idea of the challenges I face when writing stuff or getting it uploaded. I’ve recently even gone back to feeling anxious about posting them which is why I’m hardly ever sharing my reviews at the moment because I’m so worried that people will disagree or criticise me or that they’ll buy the item based on my review and recommendations and then not like it. It’s ridiculous, I know, but it’s really hard to talk myself out of thinking and feeling this way and it’s taking a lot of encouragement to get me to post stuff because my low confidence is affecting this too.

So there’s my latest update. Hopefully I’ll have better news soon and I’ll be back to enjoying visits to see my family without feeling cripplingly anxious ahead of time. In the meantime, I shall be keeping busy as much as I can and trying to be kind to myself, and also photographing everything in sight. My mum’s been into photography for about 2 years now and she’s completely obsessed and has been trying to persuade me to get a better camera for months so I finally have and in the two or three weeks since I’ve had it, I’ve taken almost 1200 photos, a huge number of which have been birds in the trees outside my flat so luckily even on the days when I can’t venture outside, I can at least take photos of things through the window and escape from my thoughts for just a little while. Below are some of the photos I’ve taken over the last couple of weeks, I don’t really know what I’m doing with a camera yet and I have no idea how most of its features work but I’m just so excited to be using it, and outside occasionally and able to be in the world and seeing everything, even frost-covered litter, to me it’s all beautiful because I actually got to see it and I couldn’t be more grateful for those times when I get to experience the outside world because my world has, in many ways, just got that little bit smaller and more scary and I’m glad that I can at least get a glimpse of it sometimes and record that forever, even if it is a case of One Step Forwards, Two Steps Back.

Should.

Should. It seems like a harmless word doesn’t it?! Just 6 little letters. We use it all the time, all day, every day. Mostly it’s about small things like you should get an early night, you should say no to that second glass of wine, you should be getting home now. Sometimes those things are larger and more meaningful, I should go on a diet, I should get more exercise, I should give up smoking. They’re all pretty harmless aren’t they. You’ll either do it or you won’t. There are no particularly huge consequences if you don’t, you know you should do them, but whether you will or not is a different matter. However, should isn’t always a harmless word, a case of being able to choose to do or not do something. Should has some dark sides, it makes us feel guilty, it makes us feel obligated, it’s a stick we use to beat ourselves with. Should, in my view, is a word that really ought to be banned. It’s caused me more harm than almost any other word I can think of. This might all sound quite dramatic and ridiculous, you might be wondering what I’m on about, how can a word so small, consisting of so few letters, possibly cause a person any harm, it’s only a word after all. Well, for a person with mental illness, or physical illness for that matter, should causes us a lot of guilt, a lot of bad feelings, and it causes us to ignore a lot of the signs our bodies and minds are giving us that we need to stop or slow down.

I should have a job.
I should be able to cope.
I should be stronger.
I should be thinner.
I should pull myself together.
I should be happier.
I should be studying for a Masters Degree.
I should be self-sufficient.
I should be doing more.
I should be trying harder.
I should be able to go out.
I should be normal.
I should be able to control my thoughts.
I should be able to go out without medication.
I should be more productive.
I should be improving.
I should be less of a burden.

It’s a bloody long list when you look at it typed out. Now you might be starting to see why should is such a problem, because having one thing in your head that you should do is ok, but having a list longer than you can possibly remember at one time is actually really overwhelming. Should drags you down. It makes you feel bad every time you can’t do something you should be doing.

Should serves no purpose. I realised this a long time ago but have never managed to properly apply it to myself. My go-to response in my head each time I can’t do something is that I should be able to do it. I don’t allow myself to accept that I can’t, that I’m unable to, by keeping it as a should it forces me into an automatic pattern of thought which leads to me feeling like I’ve failed because I’ve essentially chosen not to do the things I should. Should leads to unhappiness, it leads to depression, to unrealistic expectations, to guilt, to shame.

Instead of should we can break things down into two categories of want and need. Instead of I should go to bed early, I might be exhausted and burnt out and therefore need more sleep and to go to bed early, or I might just fancy a bit more time in bed, in which case it’d be me wanting to spend more time in bed by going to bed early. Either way, all of the shoulds that become wants instantly stop being a demand, they instantly become something you can choose to work towards, or to put off until another day. If it’s a need then you can put more time and energy into achieving those things because you know they’re more important than the wants and you therefore possibly halve your energy expenditure because you know the difference in importance of the tasks. There are all sorts of things that in today’s society we say we should do and indeed if you followed my categorising suggestion a great deal of them would be automatically placed into need to do, but some of those become less important if the consequence of doing them is that you get ill. I recently went through all of this with a friend of mine, she’s feeling very overwhelmed and knows she needs to change something but all of the things she does are things she feels she should do. When I broke it down with her she could only identify 2 things in her life that were wants, the rest were needs. Sadly, as someone whose life was turned upside down and almost all of the shoulds and needs turned into can’ts, I know this simply isn’t true, no matter how it looks. There are a few basic needs in life and as a psychology graduate I’ll actually show you this in a well-known diagram called Maslow’s hierarchy of needs. This hierarchy is brilliant and explains life so well. You have to achieve the base layer before being able to move up a level, the ultimate goal being self-actualisation where one feels happy, content and fulfilled, it’s not about winning the lottery or never having to work again, it’s about having all of your basic needs met and being content in the world and with yourself. This is something that mentally ill people really struggle with. Personally, I’m stuck working towards the Safety level because I don’t psychologically feel safe due to having an anxiety disorder, when I’m well I’m usually working towards the self-esteem level, again, difficult to achieve when you have depression.

maslows-hierarchy-of-needs

So back to the friend, we all have obligations in life and these feel really important, but the fact of the matter is that if you dropped dead tomorrow, or became instantly housebound like I did, the world still carries on without you. Almost none of the things you feel you should or even need to do would get particularly disrupted, people would just work around it either until you came back or you’d be replaced. This isn’t a fun concept and it’s not one that most of us, including me, are very keen on, we like to feel special and important and like we have a place in the world that no one else can fill and while emotionally that’s very true, physically it’s almost certainly not. When you’re off sick for a week, your company doesn’t fall apart, they call in a temp or other people work extra hours, something changes and the work gets done anyway. My workplace didn’t fall apart without me, as far as I’m aware, it’s still a fully functional hospital that’s still treating and saving the lives of the most severely mentally unwell people in our community. While I did make a difference in my job, I was replaceable. However, your health is not. You may feel like you should, have to, need, to do things, but most of these things would get done without you. What you really do need to do, is look after yourself and actually those are the only things I would say are acceptable shoulds, and even then, they’re actually needs. The biggest one for me is that I need to keep myself as well as possible. Within that are lots of little things which I need to do in order to keep myself as well as possible, these include communicating with people, trying not to take on too much, eating properly, showering every day, getting dressed every day, and getting enough sleep. These are all needs. These are all things that if I don’t do them, will result in me getting worse. There’s no should about it, I have to do those things. Just like a diabetic has to take insulin, I have to do those things to keep well. The rest of the stuff I should do is actually all just wants. I want to write reviews, I want to make my blog successful, I want to see people and to have a clean flat and to stop being messy, but none of those are needs, nothing awful will happen if I don’t do those things, my dust allergies might get worse, I might start getting angry emails from publishers, but if the reason I’m not doing those things is in order to protect my health then I’m doing what I need to do, the rest will have to wait.

Now this doesn’t come naturally to me. At all! I grew up being told I was selfish for saying I couldn’t do things and was often told it was just that I didn’t want to or couldn’t be bothered. I’m having to relearn that sometimes you have to put your own needs first and that it isn’t selfish to do that, it’s self-preservation and no one else will do it for you. I’ve always had an extreme sense of loyalty, a strong desire to do the right thing and because of that I have placed huge levels of pressure on myself and kept myself to impossibly high standards. This is all well and good but when you’re ill, you simply can’t do the same things you always could, you can’t do everything and yet that niggling should in the back of your mind keeps on telling you that you can, you just won’t. And then you’ve failed, again. And again. And again. Because the shoulds will keep on coming, the more ill you get, the longer the list of things you should be doing becomes and the more overwhelmed and buried you get. But what’s more important? Your health, or the rest? I’m not talking about family here or having enough money to survive but all of the things that we sign ourselves up to that sometimes need to be cut down or even out of our lives when our bodies or minds aren’t coping anymore. Most people battle on through, they ignore those warning signs and they keep on doing what they should and then often they’ll have a breakdown and then you’re forced to stop almost everything, far more than you would’ve had to do if you’d have just cut back. Sometimes even just being nice to yourself, taking the pressure of should off your shoulders, is enough to calm you down, help you see clearer and navigate your way back to being healthy again.

The media perpetuate this idea of should in our lives, you should all be dieting, you should all have perfectly tanned skin, white teeth, fantastic thin bodies, you should all be married with children, as a woman you should be the perfect housewife, business woman and mum, you should do workouts and cook from fresh every day, you should think positive and drink wheatgrass. Should is truly all around us and it’s very hard to even notice let alone break free from it, I’ve certainly not managed it yet. You might be wondering why I’m writing this when I’m doing such a bad job of cutting it out in my own life, I’m a pretty rubbish role model. Well, it’s mostly because of that friend I mentioned. Because I was reminded that all of the mentally ill people I’ve ever talked to say it all the time. Way more than healthy people do. We beat ourselves with this rubbish should stick and it just makes everything so much worse. I’ve never written this blog as a self-help tool, I don’t have any solutions or even really any useful suggestions to make most of the time about recovery, I’ve been blogging for 2 years, housebound for 2.5 and I’m no closer to knowing what the answer is but I do know that being kind to yourself is never a bad thing, no one ever got worse from doing that and part of doing that is removing should from your life. I don’t know when or even if I’ll manage to remove it but I know I want to and I know I need to try. Anyone who knows me in real life will know just what a big challenge for me this is, I’ve lived by should my entire life and while I can totally see the logic and reasoning, actually implementing it is a totally different thing. I do truly believe though that if you can break down all of the shoulds in your life into wants and needs, you’ll be in a much better place to tackle them head on, to manage any conditions or symptoms you have and realise what’s actually important for your survival (and hopefully thriving too) and what’s actually superfluous. Give it a go, you might be surprised at the outcome, you know you should!

Let me know in the comments what shoulds you want to let go of and whether they’re wants or needs.

Guest Post: Words

This is the first guest post I’ve put on my blog. A friend of mine who’s been reading my blog for a while got in touch recently to thank me for voicing what she couldn’t, it meant the world to me that she did that, but also made me so incredibly sad that there are so many of you out there who don’t feel able to talk, to tell others how you’re feeling. I offered to publish a post on my blog if she wished so that her voice could be heard and this is what she wanted to say, these are her words.

Words just taste like dirt, they crumble and fall out of my mouth as I try and speak about my problems.They hurt my heart as I force them out letter by letter, sound by sound, taking each and every ounce of strength I have to be truthful and honest, not only with the person you’re talking to but also myself. If I could tell a million lies just so that I didn’t have to admit that I have a problem with depression then you know what , I probably would take that risk! That risk of being caught out.
But I can’t.
Admitting to myself that I have depression and that I have struggled for years and years dealing with suicidality and self harm is the biggest challenge that I face.  Every day I make the choice to be honest with myself and admit my feelings, that these aren’t just made up. I am actually feeling something that people, my friends and family just can’t comprehend. Letting people know what I’m thinking and feeling on a daily (I mean hourly) basis is a struggle that is up there with the best of the difficult challenges that I have face in my life.

Just the idea that I could not be believed makes me want to shut down and hide away from the world, which in turn makes me feel more depressed and think that I’m a failure, I’m a nobody.
It’s a vicious cycle and somehow there has got to be a way to stop it.

That even though I wake up every day (most of the time I’m not grateful I have in fact woken up) and tell myself that today is going to be a good day, every day there is some emotion that takes me away from that happiness. I have tried to distract myself through the mundane , admire the beautiful in people and my surroundings, but unfortunately depression doesn’t work like that. It doesn’t care, it doesn’t care about gender, race, religion and it’s time that we wake up as a society and HELP those that have been courageous in admitting that they need support. Too many people are trying to communicate yet are to be misunderstood.

If only people could step inside my brain to see and feel what is going on with me on a day to day basis then they would have a tiny inkling of how difficult it is to keep up with The Jones’, to keep that smile on your face when you don’t feel like smiling, to be “normal”. That having conversations about things that you don’t give a flying rat’s arse about at lunch time without hitting out or shouting at someone means you have succeeded with life that day.
Talking is an aspect of life that we all need to be cautious of, that taking the time to sit and chat to me about who I am as a person not a person with mental illness would be one of the greatest kindnesses that someone could show me. Sometimes all I need is a hug and someone to say to me “are you doing okay today?” or “hey, you know what, I think you’re strong, you’re courageous and you just gotta keep on fighting”. If you feel it, you should say it, no matter how difficult it could be (Life Lessons 101).
What makes me feel more able to talk is a good cuppa, a nice calm atmosphere and no pretences, no having to make up some bullshit story about why my day has been ‘good’ when it clearly hasn’t. No having to fight through the words and the friend being able to understand when my words get muddled up or they just won’t come out. Looking at me as though I am an actual person, not some dumb witted half wit that I feel like I am most of the time. I don’t need you to be negative, I need you to understand and listen. To just simply be there to let me cry it all out.
Thank you, if you can do those few things for me I will do anything and everything for you. I once read something that said the kindest people are those that struggle because they know what pain is and don’t want anybody else to feel like that, it’s true.

It’s the Little Things

It’s the little things in a relationship that most people take for granted, that they don’t notice until they’re gone. Due to my conditions, or possibly even just my personality or my life experiences, I notice these things a lot, not just in my relationship but also with family and friends. The little things are the things that keep me going, that remind me that I’m loved, that I’m important and that I matter. Everyone thinks their partner is fantastic, and if they don’t they probably should be re-thinking that relationship, every time Valentine’s Day comes around we get to see unashamed declarations of love. Now I’m not going to post some vomit-inducing essay about why my boyfriend’s the best, I don’t agree with competing about things like that or making sweeping statements, my boyfriend isn’t the best (sorry Joe!), but he is the best for me. He’s not perfect, but he’s perfect for me, even if that version of perfect does involve regularly telling him to close the kitchen bin, take down his washing or tidy, well, anything!

It’s the little things he does that make my life that little bit easier, that make my day that little bit brighter. The little things like bringing me a cup of tea in the morning when I can’t face getting out of bed. Or getting in to my side of the bed to warm it up because he knows I’m constantly cold. The little things like making me a hot water bottle or giving me his hoodie so I stay warm and even letting me turn the heating on earlier because my hands and feet are going blue even though he’s only just put a jumper on.

It’s the little things, like when he went Christmas shopping two years ago he took photos of all of the Lego displays at the Lego shop so I could see them. He collected Christmas catalogues from all of the shops I’d be interested in so I could “shop” at home. He even bought me a beautiful cake home so that I didn’t feel too left out. He sometimes gets me macarons from the market because he knows I love them but we can’t bake them in our oven.

It’s the little things, like two weeks ago when he had to return something for me at a shop near the largest local garden centre, he took 40 photos of all of the different Christmas decoration displays that I might be interested in, firstly so that I could look, and secondly, so that if I’m well enough to be taken there whilst medicated I’ll already know what’s there and be a little less overwhelmed by all of the colours and choice. It’s the things like him hunting round town in all of the shops that I normally go looking in for Christmas decorations and reporting back about what they have and what I might like and even sending me photos so I can participate. It’s the little things like when he had to get glasses for the first time he knew I’d want to help choose frames so he sent photos of him wearing his favourite 5 so I could help choose.

It’s the little things like him trying to learn about different bra styles so that he could go bra shopping for me when I changed size after losing loads of weight. It’s when he then had to return almost all of the bras because I’d told him the wrong size. It’s when he then still didn’t mind doing it all again when I lost more weight and dropped another size. Don’t even get me started on the “fun” he had trying to get me jeans! I think it took 4 trips to Asda during which we discovered that I was a size 12 not a 14 like I thought and that their jeans are totally different sizes depending on what pair you happen to pick up, even when they’re the same labelled size, colour, and style. It was him not complaining about having to return heaps of stuff to H&M because despite finding out I’m a size 12, their sizes are ridiculously small and I was therefore a 14 there so he had to make the trip twice.

It’s the little things, like when he tries to explain about my condition and what life’s actually like for me, yet again, when someone has made a thoughtless comment or asked a silly question. It’s when I start explaining something about my condition and he reminds me that he does know and shows that he understands and has listened. It’s when we’re talking about something recent and he says why he knows I found it hard and can list all of the different aspects I struggled with. It’s when he reminds me to take my medication because I’ve forgotten it again and I’m feeling rough because my heart rate is through the roof.

It’s the little things like learning what I struggle with in restaurants so that he can help choose a table quickly that will suit me so that I’m not uncomfortable, I have to face the room and not have my back to it, I prefer being in a corner or against a wall so I feel safe, I can’t be near doors or draughts and I find mirrors really distracting if I can see myself in them, he knows all of this and also knows that I hate taking ages to choose a table because people end up staring at you. He also knows exactly what food I like and will help me choose when the menu is totally overwhelming and I feel like crying because I no longer know how hungry I am, what I fancy eating, and can’t even process what’s in each dish despite reading the sentence three times in a row.

These things all probably make me sound like a princess, and an absolute nightmare to live with but it’s fairly even, I also do plenty of things for Joe too and while a lot of the things Joe does are centred around my condition, when I’m well I do need a lot less “looking after” and I’m generally the driving force in the relationship, even now.

Today is our anniversary, 5 years together, and neither of us ever thought we’d be together for this long because we’re so different in personality and also in our likes and interests, but fundamentally, our morals and life goals are pretty similar and we’re striving for the same things. We’re a team and we work together, we never realised how important that would be or that we’d be tested quite so much so early in our relationship, I got ill just 2.5 years in and we’d been living together for 6 months. It’s been a real challenge and continues to be so but we try our best to work together and fight it, the little things in each day help us to do that. We laugh when he accidentally triggers a mini panic attack by moving too quickly near me on one of my flinchy days, we joke that I’m his pet because he has to feed me, shop for me, and “water” me, we’ve even jokingly considered getting our flat licensed for marriage so we can possibly get married before I’m 50. It’s the little things that help you get through the most difficult times, the big things help too of course but it’s the little things people do that have such huge importance. I don’t think many people realise what these small things mean to me, you may not even realise you’re doing them, or you may not bother because you don’t think it’ll make a difference, but trust me, these things make a difference. Every comment, text, email, phonecall, visit, chat, invitation, card, gift, anything really, is appreciated, I must be one of the most easily pleased and grateful people on the planet because I really do appreciate everything people do for me and I truly do notice all of the little things from the frequent “likers” of my FB posts, to the people who message me first, the regular commenters on my FB page and blog posts, to the people who offer to get things I need from the shops before they visit. Life is much happier when you notice these little things, especially when your world is quite small and not filled with the big things and gestures that most people hope for or expect. When you’re ill these little things are what keep you going and the more you notice them, the happier you are and the more you notice more little things, it really does spiral. I’d thought of a few little things that Joe does for me that I was grateful for but just in the process of writing this post I must have at least doubled that just in the time it took to write this because I thought more and more about the nice things he does.

I always love interacting with all you lovely readers so what little things are you grateful for? I’d love to know in the comments section below and make sure you tick the box to be notified about replies to your comment as I always do reply and that way you’ll know when I have! I can’t wait to read your Little Things.

Things I Wish You Knew

Following on from my post in July that focused on my response to the trending hashtag #ThingsIShouldHaveSaid, I got thinking more about my life. There are things I wish I didn’t have to say, and have never felt able to say, but things that I wish people knew so that they understood better, could have more empathy, and could realise just what a toll it takes being this ill for this long. So here’s my list of #ThingsIWishYouKnew, feel free to add your own in the comments, I’m always interested to hear what’s going on in other people’s heads whether it be related to a condition or not.

I feel like a failure, almost all of the time.

I’m scared I won’t get better.

I’m desperate to make a difference and I’m worried I won’t.

I don’t know what to say or what to talk about anymore, I don’t feel I have anything to add.

I second-guess myself all the time.

I’m sorry if my constant apologising is annoying but I genuinely am sorry if I’m at all difficult to be around.

I worry all the time that people are just tolerating me because they feel bad for me.

I’m scared.

I don’t know who I am anymore.

Sometimes I wonder if this is all I’ll ever be.

I don’t know who I want to be.

I no longer recognise the person in the mirror.

I don’t feel like the person in the photos.

I don’t recognise my thoughts anymore.

I dissociate regularly and often have very poor memory or concentration because of this.

I miss you.

I miss me.

I have trichotillomania – when I’m really stressed I pull out my hair. I’m so embarrassed by it and by how I look and I hate that it’s so obvious to everyone but I can’t help it. Almost no one mentions it now but I know people must be wondering why I have huge gaps in my eyebrows and eyelashes and I wonder if I’ll ever look “normal” again.

Periodically I get tempted to try medication again because I’m just so desperate to find a solution and I keep hoping that maybe this time it’ll be different and it’ll help.

I can’t tolerate change. I say I can, I try my best, but almost every change I have to deal with is extremely difficult to handle and often causes me significant anxiety.

I feel guilty all the time. About being a burden, being boring, being irritating, letting you down, and so much more. I feel guilty about all of it and spend hours trying to work out how to make it up to people.

I never feel good enough.

I hold myself to impossibly high standards.

I’m lonely.

If I spend too long thinking I panic and become overwhelmed so I constantly have to keep busy, often doing multiple tasks at once in order to drown out my thoughts.

My anxiety is starting to show on my face. I spend so long stressing and worrying that I end up frowning or stiffening up my face and now I’ve got lines across my forehead and above my nose which are becoming permanent even though I’m only 25.

I’m scared I’ll never fully recover.

I often wish I didn’t exist.

I often wish I could disappear and leave no memory of me so that my family and friends could get on with their lives and not worry about me or have to look after me anymore.

I struggle with basic tasks and feel extremely embarrassed about it because I simply don’t have the capacity to plan things properly anymore.

I’m scared of getting better and the pressure I’ll be put under to improve quickly and go back to work.

I’m scared I’ll relapse.

I’m scared I’ll put everyone through this again and that maybe next time people will be less understanding.

I question myself constantly.

I’m always looking for the reasons why I got ill and trying to work out how to get over those things so I can get better and stay well.

I spend huge amounts of time wondering why people don’t contact me, what made them stop being a close friend and what I did wrong.

I often wish I could just be invisible.

I often feel invisible.

I feel like I have to prove myself all the time

I’m sick of fearing everything and wish I could just be laid back and not care.

I spend hours most nights lying in bed unable to sleep and go to bed later than I should just to avoid this as much as possible, I even go through regular phases of dreading bedtime because of how anxious I get at night and I have to listen to audio books just to stop myself having panic attacks too often.

I’m exhausted.

The longer I’ve been ill for the more I feel like I’ve lost myself. For months I managed to stay being chatty and feeling like I had something to offer and now I’m often quiet because I don’t know what to say anymore and social anxiety just paralyses me because I feel boring or stupid.

I want to talk but I don’t know what to say.

I don’t know how to talk about being ill anymore.

I feel so overtaken by my condition now that I no longer see a line where it stops and I start, everything seems to be tainted by the anxiety and it feels like it’s killing me from the inside out.

I wish people would ask instead of guessing or assuming.

I wish people would just ask.

I desperately want my life back and to feel confident and capable again.

Why I Need to Stop Apologising

Recently, I read this article on The Mighty about a lady with a chronic illness who has vowed to stop apologising for the things she can’t do because of her condition. This really struck a chord with me and got me thinking. I spend a lot of my time apologising. Multiple times a day I’ll be thinking, typing, texting or speaking the words “I’m sorry”. But why? Why am I apologising for something that’s not in my control? That’s not my fault? That I would do anything to change but currently can’t? It got me wondering why I apologise, what circumstances illicit this, what is it I’m apologising for? Why does saying sorry come so easily to me?

Let’s break it down.

I apologise when I can’t do something. If someone invites me out and I can’t go, if someone asks something of me that I can’t do, if something has to be changed or altered in some way in order to accommodate me, I apologise. When I can’t make decisions, can’t concentrate, when I can’t pay attention, or have forgotten to listen, when I feel like I’m being irritating, or I’m repeating myself, when I’ve apologised too many times, or I feel like you’re fed up with me, when my symptoms are visible, when I’m shaking, stuttering, or unable to speak because the anxiety is too much, I say I’m sorry.

So why am I apologising? I’m apologising because I’m sorry for being difficult. For being awkward. For needing adaptations to be made. I’m sorry for the fuss that has to be made. That we’re talking about my condition – again! I’m sorry for being different. For being altered. For not being the person you gave birth to, became friends with, fell in love with. But for me, apologising goes much deeper and now serves a very ugly, nasty purpose. I’m so used to apologising for all of these things that my confidence and self-belief have now plummeted. I’ve noticed this for a number of months now. I keep expecting my self-belief to improve, for this unconfident phase to be over and to be reminded again that I do have a place in this world and that I do have things to offer, things of value. But it hasn’t passed. Instead, my apologising often now means I’m sorry for being me, and worse still, I’m sorry for existing. That’s not meant in a dramatic way, it’s also not an indication of suicidality. It means I’m sorry that my level of functioning is now so low, so intrusive, requires so many adaptations, so many considerations and alterations. It means I’m sorry I can’t change this. I’m sorry I’m the cause of all of these issues, even though I know deep down that I’m not the cause and the illness is, but the illness and me are so intrinsically linked now that I’m struggling to tell us apart. I’m no longer sure where the anxiety stops and I begin. My thoughts and feelings are so often taken over and hijacked and replaced with anxiety and fear. That wasn’t ever me, that was always the condition, but now it happens so often that those are my go-to responses and thoughts, rather than the destination I reach after a while of thinking or worrying about something. I’ve got a fast-track route to anxious thinking and it often feels like that’s becoming me. I fear increasing amounts of things, I worry more and more often about more subjects and matters and that is showing no signs of shifting. So when I say I’m sorry, I’m apologising for all of it. I’m not saying I’m sorry for the one decision I can’t make. I’m not saying sorry for the one plan I’ve not been able to commit to. I’m now apologising each time for the entire mess this period of my life feels like it’s become. It’s no longer on an incident by incident basis, it’s a blanket, cover-all apology that honestly does boil down to apologising for my existence.

This is something I’m trying to stop but it’s something that runs very deep in me. My need to fit in, to follow the rules, to be accepted and “normal” is part of why I have these anxiety disorders in the first place, it’s what helps feed the social anxiety, it’s what rules my decisions about what to wear, what to do, and how to behave. The minute I step outside that, I feel I must apologise for rebelling, for being challenging, for not fitting the mould quite as I should. It isn’t a choice that I make to step outside it. I do know that. But because the condition is inside me, because it is in my head, ruling my thoughts, it feels like it’s become me and as I’ve written before, it feels like it should be under my control. I’m aware that there are no ‘shoulds’ in mental illness, but it’s still how I judge myself and it’s still the guide that I measure myself against and use to work out when I need to be apologising for something. I know that I must stop apologising for things that I can’t do because of a condition that’s outside my control. I must because otherwise I help feed stigma. When I apologise, I accept fault and blame, I accept that it is somehow my fault, that I could have done it differently, that I chose not to. When I say sorry I admit that I’m wrong, that I’ve failed in some way, that there was a better, more right way of doing things. All of those things are stigmatising when you’re apologising for something that’s not in your control. My close family, boyfriend and best friends are starting to wise-up and can see that I’m over-apologising. They know that this isn’t right, that it’s not my fault and this is just how it is. They’re starting to pull me up on it and try to get me to stop because they understand that this isn’t in my control and apologising is just making me feel worse and is feeding the lack of confidence I feel. We’re working on it together because I don’t know where the line is anymore for when I should and shouldn’t be apologising. I’m having to relearn where the line between me and my conditions is.

This is yet another learning curve that I’m on. Another thing I’m having to figure out in the midst of the anxiety, the worry, the regular feeling of failure and letting people down. I’m now having to learn to not take responsibility for everything, to step back and realise that I deserve an apology just as much as anybody else does for all of the things I have to miss out on, worry about excessively, or change, just to be able to participate. So, I’m going to try to work on not being sorry anymore, to not keep apologising for things I can’t change or help, that a condition I’m at the mercy of affects. It makes me ill and lowers my confidence and that’s Why I Need to Stop Apologising.

Stigma: My Dirty Little Secret

This post is going to do what it says on the tin, talk about stigma. However, it’s going to take an unexpected turn so don’t stop reading yet! Stigma is defined as a mark of disgrace associated with a particular circumstance, quality, or person, and people with mental health problems are often on the receiving end of it. Stigmatic beliefs about mental illness include us being “different”, unsafe, unpredictable, unreliable, unable to work, etc. We receive this stigma from a variety of sources, from family, friends, spouses, teachers, colleagues, managers, doctors, emergency services and the media. These people make up our wider society and it’s very difficult to be someone who is diagnosed with a stigmatised condition and then feel able to be open and honest about it like so many people and charities suggest when what we’re being asked to do often opens us up to unwarranted criticism, changed behaviour and damaging comments from people. Worse than this though, is the fact that stigma about mental illness is currently so ingrained in society that almost everyone within it has some sort of stigmatic belief, that they may not even be aware of but that will be affecting how they treat others or themselves.

So where am I going with this? I told you it was going to take an unexpected turn but it hasn’t yet. As you all know, I’m a campaigner against stigma and I regularly write and talk about my experiences of mental illness and do this with a great deal of openness and honesty in order to dispel some of the myths and misconceptions and put a face to mental illness so that people can see we’re not all murderers and that mostly we don’t pose any risk to others and any risk we do pose is to ourselves. I know all about the causes of mental illness, I’ve sat exams about diagnostic criteria, I’ve worked with patients with the most severe forms of these conditions and I know that mental illness isn’t anyone’s fault and should be treated in exactly the same way as physical illness is, with dignity, respect, belief, understanding and compassion. But, and this is a BIG but, I still hold stigmatic beliefs about mental illness. I’m not stigmatising towards or about anyone else. I’m very understanding about other people’s conditions, sympathetic of their struggles and can empathise completely with what they’re going through. And yet, I don’t extend myself the same courtesy. I consciously know that mental illness isn’t my fault, it’s not in my control and it’s struck me for exactly the same reason as any physical condition could, at random! But I believe, deep down, completely undeliberately, that it is my fault, that I’m somehow weak and failing and that’s the reason I’m ill or why I deteriorate sometimes. I don’t believe this about anyone else, when one of my friends deteriorates I’m the first person to stop them blaming themselves, to tell them it’s not their fault and there’s nothing they could have done to stop it, and yet, I somehow don’t treat myself in the same way.

Stigma is so ingrained in our society that no amount of studying, work, or experience has allowed me to let go of my most strongly held beliefs that this is somehow my fault. Part of this is from society, part of it is also from people who have specifically told me it’s my fault or accused me of faking it, exaggerating or attention seeking, or suggesting it’s my fault or in my control by telling me to just try harder, to think positive, to go for a run, or eat more fruit and veg, as if that’ll suddenly make my depression or anxiety melt away, and more insultingly, as if I’ve not tried all of those things and then some, to no avail! I strongly believe that societal stigma is starting to reduce, generally people are happier to talk about mental health, they’re starting to realise that these conditions are real, just as real as any physical illness, and that they’re out of our control. People who are mentally ill are starting to feel more able to blog about it, write a status about it, or reach out and ask for help when they’re really struggling. But I would guess that most of us, when we look really deep down, are still self-stigmatising. We still believe on some level that we’re different, that we’re weak, and that we’re somehow ‘less’ than others. No wonder our self-esteem is so often through the floor when our own internal monologue lets everyone else off (quite rightly too) and yet still blames us as the one person who is in control, attention seeking and not trying hard enough. I for one, spend hours wondering why and how I got ill, what I could have done differently, what it was I did wrong, what I could be doing now to make it better. This is a totally futile exercise because it’s not my fault and there’s nothing I can do other than weather the storm as best I can, and yet deep down inside my mind tells me that’s wrong and that of course there’s something I can do or change, if I just look hard enough.

Societal stigma might be starting to improve but self-stigma is still rife. I can’t imagine I’m the only one who feels this way but until now I’ve never really admitted it to anyone, or even myself. I’m sure most people wouldn’t believe that I’m not judging them or blaming them when I’m doing exactly that to myself, and all I can hope is that by writing this, those of you in my life who are mentally ill will believe that I am telling the truth and I have never and will never judge you or blame you for your conditions because they’re truly not your fault, no reflection on you, and completely out of your control. I know I’m a hypocrite. I know I’m a walking contradiction, in so many more ways than just this one. But it’s exactly the same as most of us who would console a friend who’d failed an exam but beat ourselves up mercilessly for the same thing. This is just like that, but a hundred times worse, because no amount of revision, retakes, or extra tuition will cause this to go away or be more in my control and for some reason, despite consciously knowing all of this, even from day one, 9 and a half years ago when I first became severely depressed, I have always believed it was my fault. I know that every person I’ve met who has depression, anxiety, an eating disorder, or any of the other hideous conditions that plague our minds, is a warrior. They’re the strongest people I’ve ever met. The kindest, most compassionate people who will put their own needs aside in order to help someone else out who’s having a bad day, just to see them smile again. They fight, so hard, every day, just to get out of bed, to get dressed, to smile and try to behave normally when everything inside them is giving up, questioning what the point is, and often planning multiple ways to end it all, all before breakfast! I do all of this too, but somehow in my mind it’s not enough, I’m still weak and it’s still my fault. I constantly feel like I have to prove myself, prove that I’m trying, prove that I’m actually too ill to work, prove that I’m not making this all up.

As a society we’re definitely on the up. We’re campaigning more, we’re standing up for people’s rights more, we’re better at supporting each other and calling out discriminatory and stigmatic media portrayals and behaviour. But as individuals, are we doing the same for ourselves? I’m usually the first person to stand up for mental health, to call people out when they ask ridiculous questions like “what have you got to be depressed about?”, “why don’t you just stop worrying?”, and “can’t you just try going outside?” but I still expect miracles from myself, unrealistic changes that are simply out of my control, and when these don’t happen I feel like a failure and tell myself that’s exactly what I am. Societal stigma is on its way out, it’s got a hell of a way to go, but it’s being shown the door, but self-stigma really needs a helping hand too. Until people like me aren’t constantly belittling ourselves, feeling “different”, telling ourselves we’re failures, weak, or to blame, we won’t truly release stigma from our society. And where do we get these beliefs from? Where is it we’re internalising them from? From society. From the media, and the people around us; those who mean well and try to chivvy us along with ‘helpful’ comments about trying a bit harder and ‘just’ giving this or that a go, from those who outright blame us and make us feel small and pathetic, to the media headlines that imply we’re all dangerous, erratic, killers who can’t be trusted with any responsibility and are just a burden on society and a waste of resources. Until society stops giving us stigma to internalise, self-stigma will still be rife because it’s easy to extend a compassionate hand to a friend when you can see that they’re ill through no fault of their own but when you’ve spent your whole life hearing that ‘people like you’ are inadequate, risky, and to blame, it’s all too easy to internalise that and compound the problem with symptoms that make your self-esteem plummet and suicide seem like a great option. It’s easy enough to see the truth when these conditions affect others, I know full well that none of my mentally ill friends are at fault or to blame, they’re just as much in control of their conditions as the friends I have with physical conditions. And yet, society has ingrained the stigma into me so well that I can’t currently turn that inwards and instead I constantly judge myself. Add to that, the fact that almost all mental illnesses are coupled with low self-esteem and self-confidence, as well as negative thought patterns, and you’re well on your way to thinking, and wholeheartedly believing, that this is no more than you deserve, this is happening because you’re an awful person and you deserve to be punished and to feel this way. Stigma feeds the very worst symptoms of mental illness, the doubt is already there because of your condition and then society reinforces that and tells you that of course you can’t be trusted and that you’re definitely worth less as a person now, your symptoms then ramp up a gear and use all of the societal stigma against you to prove that you are indeed a worthless, awful person, who’s to blame for all of their misfortune. This combination of societal stigma, self-stigma, and symptomatic low self-esteem and negative thoughts are like being tortured, from the outside and the inside. There’s no let up. Until one stops, the other can’t possibly stop, and our symptoms aren’t about to give us a break and tell us we’re awesome and blameless so society will have to change first because well people are our best hope at reducing this quickly and reminding us of the truth, that this isn’t our fault, and the last thing we need to be doing whilst plagued by these illnesses, is blaming ourselves.

So there you have it: Stigma – My Dirty Little Secret!

Things I Should Have Said

This post is inspired by a recent hashtag that did the rounds on Twitter #thingsishouldhavesaid. This really resonated with me and after reading countless posts from mentally ill people wishing they’d been able to say some really poignant, thought-provoking and often heart-breaking things, I wondered what I wished I could have said at certain points in my life and during certain conversations. I jotted down a couple and then the floodgates opened and I realised there were a lot of things I thought I should have said over the years so here they are, in no particular order, these are the things I should have said and I hope that someday I might be able to say some of them when I need to. Please feel free to add your own #thingsishouldhavesaid in the comments below, I’d be very interested in reading them.

I’m sorry you thought I wasn’t enough, now I think it too.

Please stop treating me like that, I don’t deserve it.

Just because you can’t see me trying doesn’t mean that I’m not.

Just because I don’t always succeed, doesn’t mean I didn’t try.

Telling me to change is almost always for your benefit rather than mine.

Yes, I have tried thinking positively.

Yes, I have tried medication. No, it didn’t work.

Yes, I have tried praying, going to church and reading the bible, it hasn’t worked.

Please stop making me prove myself.

Please just believe me.

Please trust me, I’m not making this up!

Please stop making me feel like a failure, just because I haven’t improved.

Please stop assuming I’ve recovered just because I’ve taken one small step forwards.

Please stop assuming that the NHS help everyone, this is not the case and I’m too ill to engage with treatment outside my home and contrary to popular belief, the treatment doesn’t come to you.

Please just let me be me!

Support is the best gift you can offer.

You don’t need to know the right words to say, the best things to do, or have all of the answers, just be there for me – online, on the phone, or in person, I can do the rest!

I might be used to this but it doesn’t get easier, I’ve just learnt to tolerate more difficulty and hardship than I ever wanted to imagine was possible.

This isn’t a lesson I needed or wanted to learn.

This isn’t “part of God’s plan”.

This isn’t my fault and I don’t appreciate being told that it is.

You might not be able to handle this but imagine how I feel, I don’t get to escape or bury my head in the sand, burying myself makes no difference to the incessant anxiety swirling around in my head.

Reading my blog does not constitute support.

Reading my blog doesn’t count as being there for me.

Reading my blog shouldn’t substitute actually talking to me, and yet for some of my ‘friends’ it does.

I am lonely.

I think about suicide often and sometimes wish I was brave enough to do it.

I blame myself often. I don’t need you doing this too.

Thinking positively doesn’t make this easier.

Smiling doesn’t make me feel better or make my condition go away, it just makes it less visible to you.

My circumstances have changed, but I haven’t. You’d see that if you still bothered to talk to me.

I know it’s difficult to know what to say to me but please try, I’m the same person I’ve always been.

I feel like a burden.

I know I am a burden. Please stop pointing out how difficult it must be for those around me to deal with, I know it is and I feel guilty every day, I don’t need you making me feel worse.

I know I’ve been ill a long time but please don’t give up on me. I feel like giving up most days but knowing that people around me believe in me and believe I’ll get better is what helps keep me hanging on.

I am motivated, determined, and strong and I am doing everything in my power to recover and get well. I am fighting this with everything I have and I have not given up!