Posts Tagged ‘human’


they call me fat
make me feel ashamed
ashamed to eat
ashamed to enjoy food
ashamed to go out
ashamed to be seen
ashamed to look at
my reflection in the mirror
ashamed to think
ashamed to breath
ashamed to be human
ashamed to be me
being ashamed has
become my identity
i am not human anymore
i only exist so
others can mock me
force me to stop inside
and eat more and more
exacerbating the problem
completing the circle of
problem, abuse, shame
a vicious circle
that consumes me
a vicious circle
that i cannot escape


Alexithymia. A new word for me. A new word to get my tongue round and to understand in different ways. Alexithymia is the name for a condition that means people affected by it are dysfunctional regarding emotional awareness, social attachment and interpersonal relating. It is a condition that co-occurs with autism but does not share the same symptoms. Researchers are constantly debating which symptoms are related to autism and which are related to alexithymia. More can be read about autism and alexithymia and how they co-exist with each other by following the link: https://sites.google.com/site/geoffbirdlab/home.

In layman’s terms you have no words for anything, no emotions, nothing to say and nothing to talk about. It can be as if you are a shell just existing and literally going through the motions until you die. You have no life and spend most of your time alone wondering why you are the way you are and why people shun you. It drains you constantly wondering why people avoid you, don’t talk to you, cross the road to avoid you. You have no energy left to deal with day to day life. All you do is exist for reasons unknown to you and to anyone around you. You have no purpose in life, no reason to exist. All you can do is wonder why…

Dr Rachel Moseley from the University of Bournemouth describes alexithymia as: difficulty identifying what you’re feeling, difficulty describing what you’re feeling, and an externally-orientated, ‘stimulus-driven’ thinking style (which means that people with alexithymia don’t tend to be introspective about their feelings and emotions or spend a lot of time thinking about how others might be feeling – because emotions are very confusing to them. They therefore tend to think more ‘concretely’ about things that are going on (i.e. EXTERNAL stimuli in the outside world rather than INTERNAL feelings). And adds that this is the most common view but not the only view. This is a view I can relate to from my own personal experiences.

In my personal experiences I have been shunned by people at work and in social situations. In relationships I just sit there at the most wondering what to say or do, usually just staring blankly at a wall ignoring the person I’m with. It’s no wonder I’m single. How am I supposed to respond to questions of how I feel when I cannot interpret any feelings I have? And what happens when you don’t feel anything? How do you answer someone who asks you how you’re feeling when you’re feeling nothing at all?

Conversation does not come easy to me. I struggle to keep up with what is being talked about and quickly lose interest preferring to do anything but converse. If someone has a baby it’s so what, people buy a new car and I’m wondering why they are so excited, they got a new job or a promotion and I’m wondering if they will be so excited in a year’s time. I’m not interested right now.
Even if people are ill, injured or dying there’s barely a flicker of an emotion. Life goes on and these things happen. At funerals there’s no tears. I go because I know it’s expected, a social norm and because I know it means something to my friends. This could be seen as pragmatism and stoicism at an extreme most people cannot comprehend.

And yes I’ve felt lonely, isolated, anxious, stressed, depressed and suicidal all because I did not understand why some people wouldn’t talk to me, why some people shunned me, why I found social situations difficult, why I didn’t behave and express myself the same way other people did naturally, why no-one wanted a relationship with me, why I felt different and not in step with the rest of society. This is when you’re at your lowest, everything is too much to cope with and ending it all seems the only way out.

Yet I’m still here. The suicide attempts failed and after years of trying to find a purpose in life I did, study and research. I started an access course at college and now I have just started a PhD the highest qualification you can get. I have found something I enjoy doing and something I feel that I am good at and is worthwhile.

I was diagnosed with Asperger’s Syndrome at the age of 41 in October 2008. This answered many questions, filled in gaps and helped me to move on and understand myself and others better. There still seemed to be something missing but I assumed it was my Asperger’s being unique to me and got on with life still wondering about some things and still making some mistakes the same.
Then in March this year I was diagnosed with dyspraxia and this helped move things on a little bit. A lot of it crosses over with Asperger’s but there was still something missing, one more gap to fill. Then the lead researcher on a study I had taken part in Dr Rachel Mosely emailed me the results of some research I had taken part in about autistics and self-harm and here was a new word alexithymia.

I read about it and I recognised myself in the description. All of a sudden it made sense why I was the way I perceive myself to be. Why I find social situations difficult, why I feel emotionally detached and why I find it difficult relating interpersonally. The final gap in my personal identity had been filled and I had a name, a label to attach to my feelings and identity. I could call them something, read about them and understand them. It’s how my mind works.

I felt that all the anxiety, stress and pressure had been lifted from my shoulders. No longer did I need to try to fit in and try and be someone else because I could not and cannot be that person. I can only be me. I don’t need to try anymore I can relax and let the things I cannot control go and concentrate on the things I can do.

I understand now why I struggle in relationships and social situations and why I don’t feel emotions the same way others do and I’m fine with that. I get why my supervisor at university says they want to see some enthusiasm from me and then stare at me wondering why I’m just sat there staring back at them blankly. I now understand so much more about myself, people and life and all because of one word.

On a daily basis this means I struggle to understand why some people seem to get on with others and make progress effortlessly , talking to others, making friends, making contacts whereas I struggle to do these natural, normal interactions and are quite often left at the edges of discussions and meetings looking on, wondering what I need to do to get my voice heard and feel involved in society. This includes my autistic friends too. Many of them have social skills that I am envious of and I can only stand and wonder at their ability to start and hold a conversation with others.

One skill I do have is that I can write. I can write about how I feel and what I see going on in society far more effectively than I can talk about it. I don’t know why this is, it’s just the way I am and I’ve long got past the point where I would lay awake all night worrying about it. I can read theories, apply them to autism and write about them. Once I’ve written about them I can talk about them all day long, until the topic changes and then I’m lost.

I am lucky too in that I have a good and varied circle of friends and I look at them differently now. I see them in a new light and realise how lucky I am to have them in my life. I am also very lucky in that I am studying for a PhD and if I’m having an off day I can stay at home and do nothing or go for a run over the moors and get back to being myself.

I understand and appreciate that not everyone would feel the same way I do. I know people who don’t like labels and are always trying to fit into society in as unobtrusive a way as possible and all they want to do is to feel accepted and that they belong. And I have been there too fighting a constant battle to be accepted and understood but it was a battle that drained me of everything and nearly destroyed me.

Now I’m just myself and if people like me they do, if they don’t they don’t. I understand myself now and understand why some people like me and some don’t. I feel so much better now and I’m sure people are noticing because more people are saying hello to me and smiling at me. It’s amazing how one word can change everything in your world.


My journey to a diagnosis of Asperger’s Syndrome begins sometime in 2007. I had always felt there was something different about me and I also felt that I was missing out on something in life but I could not put my finger on it. People would say I was weird, strange and displayed inappropriate behaviour at times but nothing concrete I could actually tie down and say this is me and why I am the way I am. I had looked at various mental health conditions and whilst I felt I displayed some of the traits it did not cover the whole spectrum of emotions and behaviour I felt I had.

It was a friend of mine who suggested I might have Asperger’s Syndrome. She had read the book ‘The Curious Incident of the Dog in the Night’ and felt that I displayed many of the characteristics that the main character showed. I researched Asperger’s Syndrome on the internet and immediately felt that this was me, this was who I am and these were the answers I had been looking for all my life. I booked an appointment with my doctor mistakenly thinking he would show compassion and understanding and organise an appointment for me to see a suitably qualified psychologist. How wrong I was!

My first appointment with my doctor consisted entirely of me explaining to him what Asperger’s Syndrome was and why I felt I had the condition. I will not use the term ‘suffer’ as I feel that this gives the wrong impression. People with Asperger’s Syndrome do not suffer from it. They suffer from the ignorance of others who believe mistakenly they have little or no value to society. Unfortunately this view is shared by some members of the medical profession and immediately creates the first obstacle a patient needs to overcome, that is, the very person you go to for help and guidance sees you as a burden on the medical system rather than someone who needs compassion and understanding.

My doctor flatly refused to believe I had Asperger’s Syndrome and made it clear that he didn’t believe me and thought I was making the condition fit me rather than me fitting the condition. Reluctantly he agreed for me to see a psychologist for depression and a request for an appointment was sent off. What was most distressing for me about the behaviour of my doctor towards me was his outright refusal to believe anything I said about myself! He showed a complete disregard for me and my feelings and instead wanted to impose his own beliefs about my personality and behaviour on me.

 

This left me feeling extremely confused. Was I right in believing what I was feeling about myself or was I imagining everything! Because of this I decided to write down how I felt and why I felt that way and leave it to the psychologist to decide. Consequently on the day of my appointment I was prepared mentally and went in feeling confident which is crucial in a situation such as this. On many occasions it is very easy to forget important details about something, such as a medical condition, and very often these details can make all the difference. As a consequence I was able to leave the psychologist I saw with a valuable document for him to read in-depth at his leisure and make a considered opinion based on this rather than based on memory and a brief discussion.

After a number of weeks I received a letter from the psychologist stating that he felt I had Asperger’s Syndrome and that it would be beneficial for me to attend an assessment for Asperger’s Syndrome at Sheffield Asperger’s Service Centre. I made an appointment to see my doctor to organise an appointment again assuming it would be a straightforward appointment and the relevant paperwork would be sent off to Sheffield and I would wait for a date for my assessment. Again I was wrong. All my doctor was concerned about was the cost of the assessment and who was going to pay for it. There was no compassion shown whatsoever for my mental state or for my emotions and feelings. The rest of my life would come down to cost and a faceless committee who would decide if I was worth the price of the assessment and if my life would be suitably enhanced enough to justify the cost.

This shows up another flaw in the medical system. Whilst one person may make a recommendation based on their professional opinion it may come down to another, disconnected medical professional to decide if the person gets the treatment they need. This can lead to confusion and delays and merely add to the persons problems rather than help them. Luckily for me the situation was taken out of my doctors hands as the psychologist I had seen had referred my case to his boss a consultant psychologist unbeknown to me and he had the authority to authorise the assessment without the need for it to go before a committee. Again this shows a severe lack of communication and a lack of knowledge of procedures between medical professionals. This is something that needs addressing as it can cause friction and confusion between medical professionals and patients when so many mixed messages are being sent and received.

My assessment for Asperger’s Syndrome went smoothly and it was confirmed that I did indeed have Asperger’s Syndrome and I had the diagnosis I so desperately needed. My only issue after diagnosis was again on the subject of cost when I told my doctor that I was receiving six sessions of counselling and his face dropped at this news. It was only when I told him that it was already included in with the cost of the assessment that his face began to regain some colour!

 

This is obviously a very serious subject and in summary it has to be said that a doctor in practice needs to believe the patient whatever his or her own personal feelings towards them and support them in their journey to diagnosis, not belittle and confuse them which only adds to the considerable stress and anxiety that the patient is already going through. Without this initial support the patient runs the risk of any other conditions they may have such as depression and anxiety becoming much worse and developing into self-harm or suicide because the patient feels that no-one believes them and there is support available for them.

Doctors and other medical professionals also need to communicate situations better and inform each other of the procedures that are available for a pathway to diagnosis in order that the patient isn’t lost and confused by the whole situation. I also believe that doctors and other healthcare professionals need not just more training but better training too. This training needs to replicate the full spectrum of the autistic condition and the differences between children, adolescences and adults. By doing this the whole medical profession will be in a far better position to offer care that is focused on a particular person and the blanket coverage that can occur today. By doing this and looking beyond the short term savings, long term health and wellbeing can be better monitored and maintained and in the long run savings will be made across the board because autistic individual’s health and wellbeing will be at the centre of the plan and over time it is quite possible that less will need to be done to maintain this level of health and wellbeing at the initial level of intervention.

The most important issue though is to remember that patients are human beings with real emotions, feelings and beliefs and if they are reduced to a cost then they are also being reduced to the same status as a broken down car that can be left in a scrapyard to slowly rot and not as a valuable member of society which they all are.