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!

What’s Wrong With Your Eyebrows? – Trichotillomania!

Trichotillomania. You’ve probably not even heard of this condition. Neither had I. That was, until I saw a documentary on Channel 4 about 5 years ago where I suddenly realised that other people like me existed and that I wasn’t the “freak” I had first thought. I will point out here that I’m not diagnosed with this condition but I’m 99% sure that I have it and as there’s very little treatment for it, I’m sparing myself from having to add another diagnosis to my official list. But back to the condition and what it is – trichotillomania is an impulse-control disorder where sufferers feel compelled to pull out their own hair. This is often from the scalp but also commonly includes eyebrows and eyelashes. Patients with the condition often experience shame, guilt and embarrassment, and as the condition is quite rare and not well known, most patients only find out through the media or their doctor, potentially years after developing the condition. Treatment, if offered, usually involves patients having some form of psychological therapy as it’s widely believed to be a condition, caused by or linked to stress.

I don’t remember when I first started pulling out my own hair and I’m lucky enough that I’ve never felt compelled to pull out hair from my scalp which often causes sufferers to have bald patches and in extreme cases damage so severe that the hair doesn’t grow back. The earliest memory I have of it is when I was about 12 before I started shaving my legs and I used to pull the hairs out of my knees. It used to hurt at first so I’ve got no idea why I continued but it seemed to give me a sense of relief and I got some sense of pleasure from it. I don’t remember how often I did it but I know it was something I did regularly. When I was 16 I got depression and sometime before or during that period I started pulling out my eyelashes. Again, it really hurt to begin with but it was really compelling and I felt I had to do it. It became completely habitual and I wouldn’t even notice I was doing it. I have very sensitive fingertips and I’d sit at my desk at school or on the sofa or lie in bed and I’d stroke along my lash line forwards and backwards and then pull out hairs. I’d try really hard to stop myself because I started getting big gaps that were becoming very noticeable as I have naturally dark, quite long eyelashes, but I couldn’t stop myself until the urge went away. For months I did this and at various points over the years I’ve had no eyelashes at all because I pulled them out so frequently.

Unfortunately, when I turned 18 I started pulling out my eyebrows too. I regularly end up with gaps in one or both of my eyebrows and it’s really noticeable because I have dark hair and pale skin as you can see from the photos above. There was even a point where I got so stressed one Christmas that I ended up with no eyebrows at all and people thought I’d shaved them off which was awful. I didn’t know which was more humiliating, saying I or someone else had shaved them off, or that I was so stressed that I’d pulled them out. I’ve had some really horrible comments over the years and people are very blunt when they ask about it. I regularly get asked “What’s wrong with you?”, “What happened to your eyebrows?” and even online from a stranger got asked “What the fuck is wrong with you? You look like an alien. Or a man.” On a couple of occasions I’ve even been asked if I have cancer. I’m now very self-conscious and try to have a full or side fringe to cover up my eyebrows so it’s less noticeable. I also used to have blonde highlights because then, at least from a distance, it looked like I just had fair eyebrows and eyelashes that couldn’t be seen. It’s hard though. As a child I grew up doing dance performances on stage and was wearing make-up for that from the age of 6. I’ve only ever worn full eye make-up on stage because by the time I’d have worn it normally, I wasn’t able to. I’ve not been able to wear mascara or dark eyeliner since I was 15 and as silly as it may sound, that’s one of my dreams for when I hopefully beat this condition. I long for the day when I can buy and apply mascara and eyeliner.

My hair pulling is certainly linked to my stress levels as I do it far more when I’m feeling worried or nervous and would often do it during exams while reading the questions or when I was trying to think up the answers. Because it’s habitual I’m not aware that I do it a lot of the time which makes stopping myself very difficult. I’m a very open person normally and there’s not a lot that I won’t talk about, but this is something that very few people in my life know about (until now). In fact, I’ve only told 5 people about it and I feel very apprehensive about posting this online for the world to see. If I didn’t though I wouldn’t be practicing what I preach. I firmly believe that we should all be able to talk about whatever illnesses and conditions we have. People aren’t embarrassed that they bite their nails or smoke so I shouldn’t be embarrassed that I feel compelled to pull out my hair. Maybe if more people knew about the condition, I wouldn’t keep having to deal with horrible ignorant comments about my appearance. So there you have it, I’ve opened up my soul and posted some of my most hated photographs showing just how bad my condition has got over the years but hopefully in the good cause of explaining and answering – What’s Wrong With Your Eyebrows? – Trichotillomania!

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