Thanatophobia infographic

In 2010, I created a Facebook support group for sufferers of thanatophobia (the fear of death). Managing this account can at times be stressful and difficult, but it is always rewarding - especially when someone tells me how much the group I created helped them.

A lot of questions get asked by newcomers to the group, as they struggle to learn if they are alone in the way they feel. With that in mind, I created a survey for members of the thanatophobia support group to take.

When more than 100 people responded, the only way to extract the complete data set was to pay, but the lovely members of the support group chipped in to raise the money to access the survey responses.

I have interrogated that data and designed this infographic to display, at a glance, some key facts about thanatophobia.

As I work in data analysis, I believe all of these results to be statistically significant, with the caveat that it is true of people who admit their phobia and seek help on the internet / Facebook.

For a high-quality version of this infographic, please follow this link: http://imgur.com/zDjCTjQ

Please note: You must credit SAMawdsley.blogspot.com if you reproduce this infographic.

Miss SAMawdsley xx

What mental illness feels like ...for me

Not everyone knows what it feels like to be mentally ill. And no two mentally ill people feel exactly the same.

But to me? Mental illness feels like...

... looking in the mirror and seeing the worst person in the world - and that's a secret you desperately need to hide from everyone.

... you understand the awful subtext behind everything people say - but then being told you don't. And you don't know whether people are just denying it, or it's really the truth.

... you always need to prove that you are worthy - of your job, of your friends, of your partner, of your family, of... well, existing.

... everyone in the world has your problems too, but they are just dealing with them a lot better than you are.

... you are listening to constructive criticism, but only hearing "you are shit. Like, you are really shit. I'm trying to say this as nicely as I can, so pay attention: You. Are. Shit."

... you just want to rant, and rave, and scream, and cry, and tell somebody all your problems. But then you don't want them to be burdened by your problems, or worse - to think less of you. 

... you're absolutely exhausted from being mentally ill, that even getting out of bed is a massive achievement. But of course you can't celebrate that because everyone gets out of bed every damn day.

... you know people care as such, but they don't want to hear about your petty issues. Not really.

... when you speak, you need to finish speaking as quickly as possible because everyone is just bored of what you're saying and you don't have anything of value to contribute anyway.

... people will only like you if you take medication, because the real you is not good enough.

... everyone thinks you're pretending, or "milking it".

... successes are accidents, circumstantial, easy for everyone to achieve, or not even noteworthy.

... your body is so tired at the end of the day, but your mind needs to go over every detail of the day, the week, the month, the year, every year since you born, before you can finally sleep from sheer exhaustion.

... you try so hard not to get sick, but your body just fails you. But it fails you so often that you're sure that people think you're just faking.

... you don't know if your feelings are real or if you're just "over-reacting because she's mentally ill" or "just sensitive because she has anxiety issues".

... you've told your story so many times that it's just boring to everyone - but you don't have any other story to tell.

... every problem that anybody has is your fault. And if you can't think why it's your fault, then it's because you are so selfish that you didn't even notice you were ruining someone's life.

... people are only your friend because they feel sorry for you.

... you're just waiting for your workplace to figure out you're completely incompetent, so you try really hard to not appear utterly useless.

... you've figured out what people don't like about you, so you try extra hard to not be those things - and instead come off as annoying in a different way.

... every time you're not invited somewhere it's because you are not wanted, or not really a friend. Because if you were - you'd have been asked, right?

... people only invite you to things because they feel sorry for you, or out of social obligation - so you say no so that you don't burden them with your presence.

... you are constantly on the verge of a major catastrophe, and that you need to constantly be prepared for it, but you don't know what it actually is, or when it is actually coming.

... you get that the people you love (and who truly do love you back) don't want you to die. But if you did, while it would hurt initially, eventually they would realise they are in fact better off without you in their life.

... if you don't commit suicide, then you're not that mentally ill.

I searched for an image that represented how I feel, but ultimately it was this image, from the first line of Google image search results for the words "mental illness" that spoke to me the most.

Miss SAMawdsley xx

Please note: This is not a plea for help. Ultimately, I am currently undergoing treatment on the NHS. I am technically classified as disabled, but I work full-time and lead what I like to think is a fun and productive life. This is just putting the figurative pen to paper on what being mentally ill feels like to me.

For clarity, I have been clinically diagnosed with generalised anxiety disorder, obsessive compulsive disorder, depression, complex post traumatic stress disorder, and thanatophobia.

• What does mental illness feel like to you?
• If you've never been mentally ill, can you imagine how it might feel?

Samantha vs Samantha-on-Zoloft

A song for every emotion, right? Well this is how I feel.

Stage whisper: "I am on medication...!" I know, right? Shocking. But seriously, I am not ashamed to admit it. Like someone who is diabetic needs insulin to function better, I too need Zoloft to deal with my OCD & anxiety. But many people are ashamed. And people who should be on medication resist it - for numerous reasons, the biggest, I believe, being the stigma attached and the "crazy person" label that comes with it.

I went on Zoloft in March last year after a bout of suicidal thoughts and behaviours linked to my thanatophobia and my recent (at the time) OCD diagnosis. My head is not a fun place to be. Not by any stretch of the imagination. When my psychologist suggested I go see a psychiatrist, I knew what was coming. What is a psychiatrist if not a psychologist with a prescription pad, right? But even when the psychologist handed me the script, I looked at his outstretched hand with disdain. His hand hovered before he registered that I was not going to make any motion towards accepting his prescription. So he put it on the desk beside me. And when I left, he had to practically wrestle it into my hand. What followed was not pretty and I owe a few people a great debt of gratitude for how they rallied around me. I was not well.

The thing that frightens me now is, I am still not well. I leave for England in 71 sleeps and I decided a while ago I don't want to be on medication on my holiday. So I've been gradually weaning myself off the tablets. And it's been going fine. My withdrawals are beginning to subside and I'm able to go longer and longer between tablets. But I have regressed. I've been feeling it slowly happen over a period of time but I have been trying to deal with it - to ignore my paranoia, to self soothe and to control my anger. But tonight was a major slap in the face for me.

I'm back to being anxious and paranoid. My team lost at football tonight. It's your fault. They aren't happy that they lost. And now they all hate me. Even more than they already did. We let in seven goals. Because you suck and you let your team down. But we did get two goals. Yeah, no thanks to you!

I'm back to being angry and temperamental. I actually had the ref pull me out of the game to have a stern word to me because I was mouthing off. And your team was ashamed to know you! I am not a "mouthing off" kind of girl. But that's the thing, you see. I am. Samantha is a "mouthing off", angry, snarky, acidic, paranoid girl. Samantha-on-Zoloft is not. The paranoia, I could deal with (sort of) because that's all internal. But having no control over my behaviour and finding myself yelling at opponents and the ref is horrible. When a girl blatantly and deliberately fouled me outside of the ref's view, a small voice piped up, "Just hit her! Just punch her square in the jaw!" But I am not a hitting person! I've never hit anybody in my life! But again, I guess Samantha is. It's Samantha-on-Zoloft who is not a hitting person. Samantha tonight had to fight very, very hard not to obey that small voice.

I'm finding it hard to verbalise my feelings right now and explain why I am unhappy about this. You see, I don't have a problem with being on medication. I think my problem lies in the fact that I need it, or I feel I need it, to be a better person. I have heard people say the nicest things about me lately. I'm actually in awe and humbled by how highly people seem to think of me. But now, and it very well could be the paranoia talking, I feel like all these people like Samantha-on-Zoloft, not Samantha. Who I am, in essence, is not good enough. So who am I really? When you need medication as a diabetic, nobody judges you but when your symptoms manifest to the point you feel the need to apologise to your team for your behaviour (and I did) then you feel somehow less than perfect. But I suppose, considering how anxious, paranoid and irrationally angry I am lately, I should give the public what it wants. Or who it wants.

The other danger I find myself in is being so tired. I don't mean like, I need a nap. I mean I am drained of  all emotion, will and drive. It's the same feeling that preceded my suicidal episode last year. And I made a promise to those who helped me that I would do everything they asked me to do to get better... and stay... here... alive. And part of that was admitting when I feel like this. And I guess, this is me admitting that I do. So Samantha - anxious, paranoid and irrationally angry Samantha - should submit to Samantha-on-Zoloft. And you know how there is a song for every emotion and situation? (Or maybe that's just me...) but the song (slightly adjusted) comes to you courtesy of Eminem.

"I've created a monster, 'cause nobody wants to
see {Samantha} no more they want {Samantha-on-Zoloft}
I'm chopped liver.
Well if you want {Samantha-on-Zoloft}, then this is what I'll give ya."

Or at least, I should. Right?

Miss SAMawdsley xx


Questions:

• Are you or have you been on medication for a mental health issue?
• How did it make you feel? What about if/when you came off it?
• What do you think of people who need a tablet a day to function?

Please remember that Samantha wrote this, not Samantha-on-Zoloft.

It's probably irrational, unbalanced and warped but it's not attention-seeking, I promise.

But please be gentle as I have blogged my own truth - and that takes courage, right?

Please don't make me turn comments off.

I reject your reality & substitute my own!

Click here to pledge your support too!
It doesn't cost money, just click & read.

My psychiatrist told me I have Borderline Personality Disorder. I rejected his diagnosis. Because that's how it works, right?

"Mrs Jones, I'm afraid you have cancer."

"No I don't. I am sick of young whippersnappers like you telling me what I do and do not have! Now give me a prescription for Endone and I'll be on my way!"

Is Mrs Jones' cancer like Schrodinger's cat? Unless she looks she neither has, nor does not have, cancer, right? Because that's exactly how I feel about BPD. I neither have, nor do not have, BPD - unless I go back to my psychiatrist. And I haven't. It's been nearly a year. It was March last year.

"Borderline personality disorder (BPD) is a psychological condition marked by a prolonged disturbance of personality function, characterized by depth and variability of moods.

The disorder typically involves unusual levels of instability in mood and black-and-white thinking, or splitting. BPD often manifests itself in idealization and devaluation episodes and chaotic and unstable interpersonal relationships, self-image, identity, and behavior; as well as a disturbance in the individual's sense of self."

To be diagnosed as BPD, a patient needs to present with five out of these nine symptoms.

* frantic efforts to avoid feared abandonment

I will do anything to avoid being abandoned. I have broken up with boyfriends, purely so they couldn't break up with me. When people move away, as people tend to do throughout life, I take it so personally. To me, the fact of the matter is I am not worth enough to them for them to stay near to me. Whatever the reason for the move (work, family, relationships, etc.) it is simply more important to the person than I am. And that hurts so deeply.

* intensity and instability in relationships

* suicidal behaviour, or acts of self-harm

I cut myself throughout high school. I would carve a sparkly spiral on my wrist whenever I was sad. If that was already bloody and scabby, I would carve a star into my ankle. I planned to kill myself in 2005. My dad went to football on Monday nights. On the Sunday, I decided to wait until he went to football and then take every tablet I could find and lay down in bed. If I was still alive when Dad got home, he would just assume I was sleeping & leave me be & I'd be dead by the morning.

Last February I made an attempt. Late one night, I was so overwhelmed by everything that I got up from my bed & headed towards the kitchen of my shared unit for a big sharp knife. As I walked past my housemate's room, I felt a small voice creep up & I squeaked out his name. The sound of my voice, so pitiful, terrified me and I ran back into my room sobbing hysterically. My housemate came running into my room to find me begging him not to let me kill myself. He'd later tell me I had screamed his name & sounded terrified, not pitiful.
These days, I discovered I have physical urticaria. I can stratch myself, feel pain, see an angry red weal & know it will be gone by morning.

* an unstable self-image or sense of self

This is a huge one for me an I have trouble explaining it. I believe I am very different to other people. I don't understand the way other people's brains work and why they do what they do. I'm confused by basic human interactions and am always paranoid that I am doing it wrong. I feel like I wear myself as a costume that fools people but inside this costume is a weird alien who desperately pretends to be normal. It's really hard to describe...

* impulsive behaviour (eg. spending, substance use, reckless driving, sex, binge eating)

* emotional instability due to reactivity of mood

I am shocking with this. The smallest things affect my emotions and they do it in a huge way. A few careless words can send me deep into a spiral of sadness and paranoia. I analyse everything and come to conclusions that are usually painful to deal with and upsetting to me. I hate going to the grocery shops and will come home in a bad mood that I have been known to take out on people I love. Recently, I got insanely angry at my dog for not helping me carry my groceries into the house. Yeah, I know...

* chronic feelings of emptiness

This could be BPD and this could be thanatophobia / existential anxiety. Either way, I absolutely cannot fathom the point of life. I sit and ponder why... just, why...? I am the kind of person who needs goals. I am that donkey that will only walk if there is a carrot dangling right in front of me.

* intense, inappropriate or uncontrollable anger

In grade 10, a guy in manual arts was teasing me. The next thing I remember, my friend touched me on the shoulder. I had opened my tool cabinet, grabbed a chisel & was making my way towards him while the class looked shocked. I describe the part I don't remember as 'red'. It's like my memory was replaced by blindingly bright red. And getting angry at my dog for not bothering to help me carry groceries is not exactly appropriate, is it?

* paranoid thinking under stress or 'dissociative' symptoms

I play football. I'm pretty good. But I won't try to do anything - tricky passes that I am perfectly capable of doing or dribbling the ball up the field, taking on a player - because I am so paranoid the team will hate me if it goes wrong. Even though if they do the same, I'm OK & just yell out encouragement. Some players haven't come back this season. I am convinced it is my fault. I don't know why, I just am. They were there last season when they didn't know I had joined the team, but they won't come back this season.

If someone is upset - or I perceive they may be upset - I believe it's my fault. I usually can't think of a logical reason why it's my fault. And then I believe that it's because I'm so selfish and such a bad person that I didn't even notice what I did to upset them. It's exhausting being so paranoid.

And the dissociative symptoms? I have repressed so much of my life - moments I have been stressed, movie endings that have upset me, confrontational conversations... I just dissociate and somehow come out the other end alive.

It's still something I am considering - whether to accept this diagnosis or not. And in all honesty, this is the main reason I don't want to accept the diagnosis:

"Pejorative terms to describe persons with BPD such as “difficult,” “treatment resistant,” “manipulative,” “demanding” and “attention seeking" are often used."

Imagine a trained professional basically saying to you, "you are mentally ill. How do I know? Because you are difficult, manipulative, demanding and attention-seeking." It hurts. I'll tell you that. Luckily, the few people I have told this to have laughed. They say that if they were to describe me, they would never ever use any of those words. Except "attention-seeking". But they would use it in the "I like to be the centre of attention by being bright, bubbly and entertaining - not by faking drama or making stuff up to get attention. They understand that I am still 'me'. And if 'me' has BPD, so be it. They still love me for who I am, mental illnesses and all.

You may think I am being too open and revealing by writing this blog post. But I am me. If I wrote about the complications of pregnancy, that would be fine. If I wrote about having diabetes, that would be fine. If I wrote about actually being diagnosed with cancer, that would be fine. Obviously they would all be sad, but  in revealing my tragic medical history, I wouldn't be revealing too much. Well I have a mental illness. I have Obsessive Compulsive Disorder. I have thanatophobia / existential anxiety. I may have Borderline Personality Disorder. And if I do, that kind of sucks... but I refuse to be ashamed of it. Like the ad says, "I can treat my mental illness. I can't help how you treat me."

Miss SAMawdsley xx

Questions:

• Do you have a mental illness that you have kept hidden? Why?
• What is your opinion on being open about having a mental illness?
• Have you pledged to support a change in attitudes to mental illness? PLEDGE NOW