How Autism friendly is your church?
I ask this because I'm not sure I've ever thought about it, so I'm sure there are many others who haven't too. Being a young woman with Aspergers who has a brother with Autism too, this topic really should've occurred to me before.
I think there are two main areas to think about here, the first is easier to address. Many people with Autism/Aspergers have sensory difficulties, in that many of us find things like loud noises (eg.balloons), bright lights, certain textures of food or materials, may really distress us. There is a huge difference between the non-ASD 'I really don't like that' and the ASD 'I really cannot cope with that'. Things like balloons bursting can actually hurt our ears. So imagine if we get stuck with the seat next to the loudspeaker - we're not going to stick around long.
I don't think the response to these things is to necessarily provide -Autism friendly alternatives to everything, or make special 'Autism seats' (!) or anything like that. However I think there needs to be an awareness within churches that if someone seems overly fussy, or just plain difficult - just accommodate them lovingly, without judging them. I think unseen disabilities as well as mental health issues need to be talked about more. See the Mind and Soul website for brilliant info on mental health & Christianity. Mental illness is not due to a lack of faith - I think this needs to be clear in sermons where a pastor might be talking about worry, for instance, to make a clear distinction between worry that every human experiences and, for instance an Anxiety Disorder. I wonder how many churches have mental health support groups? A small group/ meeting for those with special needs?
Anyway, back to topic, the second issue with Churches and Autism, is more difficult to tackle. I personally have been brought up in the Church, so I have found many things easier to understand than a lot of other Aspies. However the whole issue of community, for example, still gets me. When someone says 'God made you for community' - a lot of Aspies would think 'no, He definitely didn't!!' I think what we really mean is - 'it doesn't look like it'. Our minds work so differently from others, we know we are different and we find it hard to mix with large volumes of people, it doesn't look like we're made for community at all! Some of us tend to get along with other Aspies or people who share the same interests better - but if you want to get to know us, just one or two at a time though!
The point I'm trying to get at is the way Christianity is presented - in terms of abstract concepts and emotions - can often be very difficult for us to understand.
'Imagine how the Father felt as he watched his son die' might be a helpful thing for most people, but for someone who has great difficulty imagining things from others' points of view, probably not so much. Our brains are actually wired differently and this imagining the emotions of others thing is not something that naturally tends to happen (unless, I find, something very similar has happened to me, then I can transfer my emotions to that person once I've thought about it long enough). Obviously we get that the Father would feel distraught, because we have learnt that's how people feel when their child dies, but actually imagining that emotion - for most of us - is next to impossible due to our neurological wiring. Clearly these things have no easy answer. I thought in the past maybe an 'alpha for aspies' might be a good idea, but most Aspie adults probably don't have any idea they have Aspergers.
The thing is, our brains work with facts, many of us are good at maths, equations, numbers, or our thinking is very black and white. Maybe an additional written resource to complement alpha would be an idea? Christianity presented with less emotion - although love is the heart of the Christian message! I think there are some probably very subtle things - wording - for example which could make it a lot easier for us.
So, after a lot of my rambling thoughts, what are yours? Are there things your church could do to include those of us who have neurological diversity?
If anyone wants to find out more about living with Autism or being an Aspie Christian, you can visit the NAS website, (for Autism info) or you can contact me.
Emma x
1 May 2013
2 April 2013
World Autism Awareness Day - What does Autism mean to me?
I've been thinking about this a bit today. If you had asked me the same question 2-3+ years ago, I would've given a very different response. However since finding out a year ago that not only is my brother Autistic, but that I too have Aspergers Syndrome, my response has altered and widened significantly.
Let's start with my brother; Autism is the reason he is obsessed with clocks and when I say I'll be there in a minute, he times 60 seconds on his watch and then tells me off for being late. It's the reason he doesn't know that it's socially inappropriate to hug strangers (and tickle them) for extended periods of time and the reason he jumps at sudden noises.
My brother also has cerebral palsy and severe learning difficulties and it is these learning difficulties that (I think) makes his Autism reasonably typical/characteristic. He can't learn that 'in a minute' doesn't mean 60 seconds, or that if the 50 random people he's tickled don't like it, other people probably won't either.
Let's fast-forward to now. To me, Autism / AS / ASD (lots of conditions, all on a spectrum) means a lot more than that. (I'll use AS as an abbreviation from now on). AS is the reason I've always found it difficult to connect with people and 'make friends'. It's the reason I've always felt like an outsider in a world where I was missing... something. Why couldn't I just talk to people? Why did they seem to gravitate away from me? Why did I always feel alone?
The answer lies within Aspergers. I've now learnt that I've never been able to quickly and accurately gauge what other people are thinking/feeling (if at all). I now know why I find sarcastic comments so confusing and hurtful - I never know if they are telling the truth or being 'amusing' (sarcastic). I now know that my attempts at 'reading between the lines' are generally either reading where there's nothing, or mistaking yellow as black; they're way off. Autism is the reason why I can't stand the sound of a toothbrush/nailbrush, why I hate balloons (when they pop my ears hurt) why, at 22, I feel more comfortable going to a museum than going to a nightclub.
There are a lot of things about AS that have had a very negative impact on my life. After years of feeling rejected by 99.9% of people 99.9% of the time because of my differences (which I couldn't see), I fell into a long and severe depression. That feeling of constant rejection had worn away at my self esteem so much, I saw no point in going on living. That is a horrible place to be.
But somehow, somehow I survived those years (which is nothing short of a miracle) and I'm still here today and thanks to my faith, stronger than before. For me, finding out I had AS was the key to unlocking this big padlock of a cage full of other cages which I couldn't get to before. It enabled me to understand my thinking better and therefore work on changing it. Before I knew I had AS, I went round in circles with therapist after therapist, medication after medication, finding nothing except that I had no emotional awareness. (Although I still think many of the therapists believed I was aware of what was 'wrong' and I just wasn't telling them!)
So, the positives about AS; it gives me an analytical brain that can excel in certain areas; when I do something, I do it 'properly', there are no half measures with me! If I'm going to do something, I will put all my effort and strength into doing that thing to the absolute best of my ability. AS makes me very honest - it doesn't occur to me to lie most of the time.
Having AS has opened my mind to many things and I hope, made me less judgemental as a person especially in the area of mental health. It has enabled me to see that I am not unlovable, I just don't fit into other people's idea of 'normal' very well (despite trying my best). I'm slowly learning to accept myself as God made me and find my identity in Him, not in other's opinions of me.So, what does Autism mean to me? It's the key to understanding me and my family. It's the world through a different lens, a mind that runs a different operating system. If you know anyone who just doesn't ever quite 'fit in', try and get to know them - it might not be easy, but it will be worth it :)
Let's start with my brother; Autism is the reason he is obsessed with clocks and when I say I'll be there in a minute, he times 60 seconds on his watch and then tells me off for being late. It's the reason he doesn't know that it's socially inappropriate to hug strangers (and tickle them) for extended periods of time and the reason he jumps at sudden noises.
My brother also has cerebral palsy and severe learning difficulties and it is these learning difficulties that (I think) makes his Autism reasonably typical/characteristic. He can't learn that 'in a minute' doesn't mean 60 seconds, or that if the 50 random people he's tickled don't like it, other people probably won't either.
Let's fast-forward to now. To me, Autism / AS / ASD (lots of conditions, all on a spectrum) means a lot more than that. (I'll use AS as an abbreviation from now on). AS is the reason I've always found it difficult to connect with people and 'make friends'. It's the reason I've always felt like an outsider in a world where I was missing... something. Why couldn't I just talk to people? Why did they seem to gravitate away from me? Why did I always feel alone?
The answer lies within Aspergers. I've now learnt that I've never been able to quickly and accurately gauge what other people are thinking/feeling (if at all). I now know why I find sarcastic comments so confusing and hurtful - I never know if they are telling the truth or being 'amusing' (sarcastic). I now know that my attempts at 'reading between the lines' are generally either reading where there's nothing, or mistaking yellow as black; they're way off. Autism is the reason why I can't stand the sound of a toothbrush/nailbrush, why I hate balloons (when they pop my ears hurt) why, at 22, I feel more comfortable going to a museum than going to a nightclub.
There are a lot of things about AS that have had a very negative impact on my life. After years of feeling rejected by 99.9% of people 99.9% of the time because of my differences (which I couldn't see), I fell into a long and severe depression. That feeling of constant rejection had worn away at my self esteem so much, I saw no point in going on living. That is a horrible place to be.
But somehow, somehow I survived those years (which is nothing short of a miracle) and I'm still here today and thanks to my faith, stronger than before. For me, finding out I had AS was the key to unlocking this big padlock of a cage full of other cages which I couldn't get to before. It enabled me to understand my thinking better and therefore work on changing it. Before I knew I had AS, I went round in circles with therapist after therapist, medication after medication, finding nothing except that I had no emotional awareness. (Although I still think many of the therapists believed I was aware of what was 'wrong' and I just wasn't telling them!)
So, the positives about AS; it gives me an analytical brain that can excel in certain areas; when I do something, I do it 'properly', there are no half measures with me! If I'm going to do something, I will put all my effort and strength into doing that thing to the absolute best of my ability. AS makes me very honest - it doesn't occur to me to lie most of the time.
Having AS has opened my mind to many things and I hope, made me less judgemental as a person especially in the area of mental health. It has enabled me to see that I am not unlovable, I just don't fit into other people's idea of 'normal' very well (despite trying my best). I'm slowly learning to accept myself as God made me and find my identity in Him, not in other's opinions of me.So, what does Autism mean to me? It's the key to understanding me and my family. It's the world through a different lens, a mind that runs a different operating system. If you know anyone who just doesn't ever quite 'fit in', try and get to know them - it might not be easy, but it will be worth it :)
Happy World Autism Awareness Day!
x
26 February 2013
The good, the bad and the ugly of ... labels.
I was on the bus home from college today, when some young (navy)? cadets got on a couple of stops after me. The bus was crammed full of people to begin with, but when it emptied out a bit there were some spare seats and one of the cadets decided to move to a free double seat to spread out a bit. The others, joking, jeered 'loner' and, 'what are you, autistic?!', to rounds of laughter from them all.
'Hilarious' I thought, in the most sarcastic tone my mind could muster.
So here is my problems with labels. Autistics have been in society since records began. Only they weren't called 'autistics'. They were just known as 'Ella the quiet girl', 'mad aunt Flo' or 'Tom the maths genius', or maybe; maybe they were just known by their names, Albert Einstein, Charles Darwin, Amadeus Mozart, Sir Isaac Newton, to name a few. In history, before labels, people were treated as individuals. If hypothetically one person knew Mozart and Einstein, they wouldn't assume Einstein was too a musical child prodigy and Mozart had the mind that would alter the way we view the scientific world today. (Although if their life spans had overlapped, I would've loved to know how they got on if someone had introduced them to each other!).
Say someone knows 1 person with autism. Take my brother; he has classic-ish Kanner autism, severe learning difficulties and cerebral palsy. They might assume all autistic people are like him. To discover that I too have an Autistic Spectrum Disorder (albeit up the Aspergers end), they wouldn't believe me. (A lot of people don't!).
My point here is over-generalisation. Just because this one person with Aspergers you knew when you were 16 loved boats, doesn't mean I do. Just because he/she hated CSI, doesn't mean I do... you get the picture?
I think the lack of understanding among the general population about these conditions leads to damaging over generalisation regarding a group of people who fall under one label. Saying all people with Autism love trains is a bit like saying all people with Anorexia love Maths, or all people with Kidney disease love painting . It's completely illogical, yet most seem unaware of that.
This is a major problem with professionals too - I know guidelines have to be put in place to give health professionals an idea of what to do, but when they are so generic, you loose the person, and they (too often) become the label to their health professional.
- Guideline x.45.y.99: 1st line treatment R, 2nd line treatment Y, if that doesn't work, ignore them and tell them it's stress! I know it's not quite as simple as that and a lot of health professionals out there do care very much about their patients and want to do what's best for them - I'm not having a go, I'm just saying what it feels like to us. (If you're not aware, I am currently preparing to apply to study medicine at uni)
This 'lost in a guideline' scenario becomes not just impersonal, but highly dangerous, especially when the incorrect label is applied. (As in my case it was for many years, but let's not go there now).
So I think I've moaned about the bad and the ugly long enough, let's look at some good things about labels.
When I first realised that I had Aspergers, it's only because there is a name for it that I was able to find collections of information about the syndrome and resources to help me. If there was no label, I would never have found Rudy Simone's book which for the first time in my life, I was reading and thought, 'she could be describing me. I'm not the only one!'
That sense of community and (a part of) my identity as an aspie has been essential to me moving forward in life and recovering from the mess my life had gotten into. That is a very big positive.
For professionals, it can help to pool resources and enable those who need help to receive the right kind of help. (However that only works when the correct label is applied!)
So... labels. I think if people were more aware of conditions and that we are still individual persons, then the good would outweigh the bad. However, the world today is a long, long way off that.
'Hilarious' I thought, in the most sarcastic tone my mind could muster.
So here is my problems with labels. Autistics have been in society since records began. Only they weren't called 'autistics'. They were just known as 'Ella the quiet girl', 'mad aunt Flo' or 'Tom the maths genius', or maybe; maybe they were just known by their names, Albert Einstein, Charles Darwin, Amadeus Mozart, Sir Isaac Newton, to name a few. In history, before labels, people were treated as individuals. If hypothetically one person knew Mozart and Einstein, they wouldn't assume Einstein was too a musical child prodigy and Mozart had the mind that would alter the way we view the scientific world today. (Although if their life spans had overlapped, I would've loved to know how they got on if someone had introduced them to each other!).
Say someone knows 1 person with autism. Take my brother; he has classic-ish Kanner autism, severe learning difficulties and cerebral palsy. They might assume all autistic people are like him. To discover that I too have an Autistic Spectrum Disorder (albeit up the Aspergers end), they wouldn't believe me. (A lot of people don't!).
My point here is over-generalisation. Just because this one person with Aspergers you knew when you were 16 loved boats, doesn't mean I do. Just because he/she hated CSI, doesn't mean I do... you get the picture?
I think the lack of understanding among the general population about these conditions leads to damaging over generalisation regarding a group of people who fall under one label. Saying all people with Autism love trains is a bit like saying all people with Anorexia love Maths, or all people with Kidney disease love painting . It's completely illogical, yet most seem unaware of that.
This is a major problem with professionals too - I know guidelines have to be put in place to give health professionals an idea of what to do, but when they are so generic, you loose the person, and they (too often) become the label to their health professional.
- Guideline x.45.y.99: 1st line treatment R, 2nd line treatment Y, if that doesn't work, ignore them and tell them it's stress! I know it's not quite as simple as that and a lot of health professionals out there do care very much about their patients and want to do what's best for them - I'm not having a go, I'm just saying what it feels like to us. (If you're not aware, I am currently preparing to apply to study medicine at uni)
This 'lost in a guideline' scenario becomes not just impersonal, but highly dangerous, especially when the incorrect label is applied. (As in my case it was for many years, but let's not go there now).
So I think I've moaned about the bad and the ugly long enough, let's look at some good things about labels.
When I first realised that I had Aspergers, it's only because there is a name for it that I was able to find collections of information about the syndrome and resources to help me. If there was no label, I would never have found Rudy Simone's book which for the first time in my life, I was reading and thought, 'she could be describing me. I'm not the only one!'
That sense of community and (a part of) my identity as an aspie has been essential to me moving forward in life and recovering from the mess my life had gotten into. That is a very big positive.
For professionals, it can help to pool resources and enable those who need help to receive the right kind of help. (However that only works when the correct label is applied!)
So... labels. I think if people were more aware of conditions and that we are still individual persons, then the good would outweigh the bad. However, the world today is a long, long way off that.
8 February 2013
Attitudes towards disability - pt 1
I've been thinking about writing on this topic for a while, I will probably write a few blogs around it.
Today - What does disability look like?
I was recently with a group of teenagers briefly discussing this. I was shocked and rather horrified to hear some teenage girls say that to be disabled means to be in a wheelchair. The fact is that less than 8% of disabled people use a wheelchair.
When I say disabled person, what images enter your mind?
The bright young woman with a successful career, the quiet bloke who never talks to anyone, the mother down the road with 4 kids, the older lady with 7 cats, the little boy who hates green veg.
Any of these people could be 'disabled'.
I say 'disabled', because I know many of us don't like the word. It has so many unhelpful connotations, like the wheelchair image, the benefits 'scrounger' image. That's the one I hate the most. Recent statics showed that 97% of claims for disability benefits are NOT fraudulent. All this stereotype does is divide society and lead to hostility and discrimination against disabled people, making it even harder for us to find our place and get training (and maybe) work.
Some of us may not be like 'normal' people, our minds and/or bodies may not work like yours. However, we are not necessarily 'disabled', just 'differently-abled'. If people were not so fiercely judgmental and ignorant, I think many more disabled people would be able to play a role in society instead of being pushed to the margins of it.
The issues of mental illness and mental disabilities has been overlooked for far too long. How has it become shameful to have a mental illness, to have people judge you and mock you, when if you had a physical illness people would be helping you out? It's so wrong! I'm glad to see the time to change campaign doing good work on this.
Back to topic though - what does disability look like? I think it varies depending on your perception of it, what you see passes through tinted lenses, coloured by your own opinions.
If you look at disabled people with scepticism and judgement, you will only see negative things.
In reality, disability 'looks' like a human being, a person who has more struggles than other people, seen or unseen.
If more people were accepting and adaptable, more disabled people would be able to find work. It's not disability keeping people out of mainstream society - it's peoples attitudes towards it.
Today - What does disability look like?
I was recently with a group of teenagers briefly discussing this. I was shocked and rather horrified to hear some teenage girls say that to be disabled means to be in a wheelchair. The fact is that less than 8% of disabled people use a wheelchair.
When I say disabled person, what images enter your mind?
The bright young woman with a successful career, the quiet bloke who never talks to anyone, the mother down the road with 4 kids, the older lady with 7 cats, the little boy who hates green veg.
Any of these people could be 'disabled'.
I say 'disabled', because I know many of us don't like the word. It has so many unhelpful connotations, like the wheelchair image, the benefits 'scrounger' image. That's the one I hate the most. Recent statics showed that 97% of claims for disability benefits are NOT fraudulent. All this stereotype does is divide society and lead to hostility and discrimination against disabled people, making it even harder for us to find our place and get training (and maybe) work.
Some of us may not be like 'normal' people, our minds and/or bodies may not work like yours. However, we are not necessarily 'disabled', just 'differently-abled'. If people were not so fiercely judgmental and ignorant, I think many more disabled people would be able to play a role in society instead of being pushed to the margins of it.
The issues of mental illness and mental disabilities has been overlooked for far too long. How has it become shameful to have a mental illness, to have people judge you and mock you, when if you had a physical illness people would be helping you out? It's so wrong! I'm glad to see the time to change campaign doing good work on this.
Back to topic though - what does disability look like? I think it varies depending on your perception of it, what you see passes through tinted lenses, coloured by your own opinions.
If you look at disabled people with scepticism and judgement, you will only see negative things.
In reality, disability 'looks' like a human being, a person who has more struggles than other people, seen or unseen.
If more people were accepting and adaptable, more disabled people would be able to find work. It's not disability keeping people out of mainstream society - it's peoples attitudes towards it.
19 November 2012
It's been a while... very much a 'dreams' post rather than a 'detours' one :)
I was just looking back at when I last posted - 13th of July. Oh how things have changed in the past 4 months... ...4 months... is that all?!
Around the time of the last entry, James and I were just getting to know each other... and we've been together well since about 2 weeks after then, nearly 4 months now :)
I am living in Cheltenham, I've done a half term-and-a-bit of my A levels - it doesn't sound like much, but for me it wasn't the academic stuff I struggled with at all, it was all the other stuff that goes along with being at college etc... I guess it just wasn't God's timing. I'm not entirely sure why I had to wait 6 years and go through all of that until I started my A levels though... It'd be nice to find out one day.
I'm not really sure where to start with 'what else in new'... everything is new... I'm 'me' again... that's a massive answer to prayer. Emma is back... although rather scarred now.
Oh I reapplied for funding stuff, they still won't agree :/ I'm coming round to the idea that I may have to live with these for the rest of my life.. It will just make going into medicine so much more... squirmish! When people look at or ask me about my scars, at the moment I still want the ground to swallow me up - it feels like my organs bunch up together and shrink back inside me away from my skin.
Looking back over the past few years... it is quite miraculous that I'm still alive. Finding out I'm aspie, turning back to God has strengthened me so much... I'm so excited about the future now :)
... Never ever thought I'd say that again.
I think that's all for now,
Take care peoples
X
Around the time of the last entry, James and I were just getting to know each other... and we've been together well since about 2 weeks after then, nearly 4 months now :)
I am living in Cheltenham, I've done a half term-and-a-bit of my A levels - it doesn't sound like much, but for me it wasn't the academic stuff I struggled with at all, it was all the other stuff that goes along with being at college etc... I guess it just wasn't God's timing. I'm not entirely sure why I had to wait 6 years and go through all of that until I started my A levels though... It'd be nice to find out one day.
I'm not really sure where to start with 'what else in new'... everything is new... I'm 'me' again... that's a massive answer to prayer. Emma is back... although rather scarred now.
Oh I reapplied for funding stuff, they still won't agree :/ I'm coming round to the idea that I may have to live with these for the rest of my life.. It will just make going into medicine so much more... squirmish! When people look at or ask me about my scars, at the moment I still want the ground to swallow me up - it feels like my organs bunch up together and shrink back inside me away from my skin.
Looking back over the past few years... it is quite miraculous that I'm still alive. Finding out I'm aspie, turning back to God has strengthened me so much... I'm so excited about the future now :)
... Never ever thought I'd say that again.
I think that's all for now,
Take care peoples
X
13 July 2012
Moving on
So, today I put down the holding fee for a flat in Cheltenham! It's easily walkable distance from town, but in a quieter residential area, just down the road from both my church and a big park in Cheltenham - so green countryside won't be too far away for country-bumpkin me ;) I can take my cat too! The only downside is it's very small. I'm going to have to sell quite a lot of furniture and maybe buy a couple smaller bits which make better use of floor space.
I'm feeling good tonight. Kind of reflective so sorry if this waffles on about random/deep/cliche nonsense.
There are so many cheesy phrases I could use right now, 'start of the rest of my life' is the first one that comes to mind. I'm feeling excited about the move, but also calm. I was quite nervous last night, but today I ok. It's going to be a massive change, it's almost like moving out of home (even though I technically live on my own now). I'm looking at probably going to college to take some A levels as they would take the same amount of time to complete as a year of voluntary work and a year of access course, but they're so much more widely accepted. If I can discipline myself to work through the boring crap-ness of these 2 years, many other doors open to me. I'm hoping now knowing what the long term bit is (Aspergers) and with the other stuff being better, that college will be better at supporting me and being more flexible with me. To be honest if I say I need x y and z because of a disability it would be against the law not to make 'reasonable adjustments' to accommodate me.
So... in my last post I said about the appointment for assessment for surgery being turned down. That was a massive knock. I felt pretty rubbish after that but got through it.
I never realized how much I had distanced from God until recently. I'm so grateful for him and my church, where I've really been able to grow in my faith again. It's definitely what's keeping me on level ground at the moment. He's who I turn to for everything, I know I can trust him with everything and I can't wait to see what he has in store for the future. I know he will give me what I need, although sometimes his ideas are rather different to mine!
So yeh, I'm feeling good about moving on, scared obviously. But I've waited so so so so so so so so so long for this, I just can't wait to move on from this chapter of my life, despite the many challenges I know I'm going to face, I just feel like everything's beginning to slot into place.
Going to shut up now, I need to eat something before the painkillers wear off! (Eustachian tubes playing up - causing a stupid amount of pain.. been awake since 4am with it)
Night all,
X
I'm feeling good tonight. Kind of reflective so sorry if this waffles on about random/deep/cliche nonsense.
There are so many cheesy phrases I could use right now, 'start of the rest of my life' is the first one that comes to mind. I'm feeling excited about the move, but also calm. I was quite nervous last night, but today I ok. It's going to be a massive change, it's almost like moving out of home (even though I technically live on my own now). I'm looking at probably going to college to take some A levels as they would take the same amount of time to complete as a year of voluntary work and a year of access course, but they're so much more widely accepted. If I can discipline myself to work through the boring crap-ness of these 2 years, many other doors open to me. I'm hoping now knowing what the long term bit is (Aspergers) and with the other stuff being better, that college will be better at supporting me and being more flexible with me. To be honest if I say I need x y and z because of a disability it would be against the law not to make 'reasonable adjustments' to accommodate me.
So... in my last post I said about the appointment for assessment for surgery being turned down. That was a massive knock. I felt pretty rubbish after that but got through it.
I never realized how much I had distanced from God until recently. I'm so grateful for him and my church, where I've really been able to grow in my faith again. It's definitely what's keeping me on level ground at the moment. He's who I turn to for everything, I know I can trust him with everything and I can't wait to see what he has in store for the future. I know he will give me what I need, although sometimes his ideas are rather different to mine!
So yeh, I'm feeling good about moving on, scared obviously. But I've waited so so so so so so so so so long for this, I just can't wait to move on from this chapter of my life, despite the many challenges I know I'm going to face, I just feel like everything's beginning to slot into place.
Going to shut up now, I need to eat something before the painkillers wear off! (Eustachian tubes playing up - causing a stupid amount of pain.. been awake since 4am with it)
Night all,
X
5 July 2012
Really tough day...
So.. it's been a long time since I've written...
This will be very open, as I feel this sort of stuff needs to be less scary to talk about - and - it's all that's on my mind at the moment. So here goes, forgive me for perhaps being a little blunt.
My arms and legs are severely scarred. I have always wanted to work as a medic, which means wearing short sleeves. Which causes... MAJOR problems.
I have been free of self-harm for over a year now. I am moving on in life and want nothing more in the world than for the scars to be gone. I know whatever surgery takes place my arms will never be 'normal', but it's very hard to move on in life when your intimate history is written in bold capital letters all across your body.
I believe I meet the criteria for NHS treatment as the 'original issue' has resolved and the scars cause 'severe psychosocial dysfunction' / psychological distress.
They cause more than that... imagine being in a boiling hot room and having to wear long sleeves and trousers or thick tights... imagine never being able to go to the beach or sunbathe ever again... never being able to wear a t-shirt ever again, and only dresses that can be worn with a jacket and dark tights (skin colour ones even at the thickest denier just don't work).
It's not just in my personal life they become difficult... a LOT of work uniforms for low-paid jobs insist on short sleeves - and even with long sleeves if I stretch to get something a couple of scars will peek out of my sleeve - it's not something employers will 'see past'. It severely affects my chances of employment and career opportunities.
That's not even mentioning the effect they have on my self-confidence... (like what self-confidence!!)
Anyway, my GP referred me to a plastic surgeon, and I had an appointment all booked for early-mid august... today I got a letter in the post saying my appointment has been cancelled due to 'non-funded procedure'. There aren't really crystal-clear guidelines on this sort of thing cos it's so seldom requested/done. He will put in for an INNF/IFR (interventions not normally funded/individual funding request) but said he really doesn't know if they will agree to it and feels it's likely they won't.
So... now what?
Otherwise had a pretty boring day, haven't managed to eat 'enough' (although it still feels like too much) today, otherwise I've been doing well.
Oh the bus driver today was a *()&%^$*&^** ... I asked if the bus went past my stop because it seemed like an extra service (unusual time) and he looked confused and then said yes. then he stopped about 3/4 mile away from home and says 'I lied, it doesn't stop there'. Having just opened the letter when I was out and having a very heavy bag of shopping (nothing exciting - cleaning supplies) this was the last thing I needed. Had been holding back the tears for about an hour by then and that was the last straw... walked back home sniffling and feeling rather embarrassed! :/
There's no way I could ever afford to get surgery privately either.
So a waiting game. I was so hoping that this would just go smoothly and I would have a semi fresh start... so I could pursue the career I've always wanted and could walk around in everyday life without feeling paranoid that my scars are showing.
So everything is up in the air again and I'm feeling pretty lonely and rubbish.
Night all, sorry for the moan xx
This will be very open, as I feel this sort of stuff needs to be less scary to talk about - and - it's all that's on my mind at the moment. So here goes, forgive me for perhaps being a little blunt.
My arms and legs are severely scarred. I have always wanted to work as a medic, which means wearing short sleeves. Which causes... MAJOR problems.
I have been free of self-harm for over a year now. I am moving on in life and want nothing more in the world than for the scars to be gone. I know whatever surgery takes place my arms will never be 'normal', but it's very hard to move on in life when your intimate history is written in bold capital letters all across your body.
I believe I meet the criteria for NHS treatment as the 'original issue' has resolved and the scars cause 'severe psychosocial dysfunction' / psychological distress.
They cause more than that... imagine being in a boiling hot room and having to wear long sleeves and trousers or thick tights... imagine never being able to go to the beach or sunbathe ever again... never being able to wear a t-shirt ever again, and only dresses that can be worn with a jacket and dark tights (skin colour ones even at the thickest denier just don't work).
It's not just in my personal life they become difficult... a LOT of work uniforms for low-paid jobs insist on short sleeves - and even with long sleeves if I stretch to get something a couple of scars will peek out of my sleeve - it's not something employers will 'see past'. It severely affects my chances of employment and career opportunities.
That's not even mentioning the effect they have on my self-confidence... (like what self-confidence!!)
Anyway, my GP referred me to a plastic surgeon, and I had an appointment all booked for early-mid august... today I got a letter in the post saying my appointment has been cancelled due to 'non-funded procedure'. There aren't really crystal-clear guidelines on this sort of thing cos it's so seldom requested/done. He will put in for an INNF/IFR (interventions not normally funded/individual funding request) but said he really doesn't know if they will agree to it and feels it's likely they won't.
So... now what?
Otherwise had a pretty boring day, haven't managed to eat 'enough' (although it still feels like too much) today, otherwise I've been doing well.
Oh the bus driver today was a *()&%^$*&^** ... I asked if the bus went past my stop because it seemed like an extra service (unusual time) and he looked confused and then said yes. then he stopped about 3/4 mile away from home and says 'I lied, it doesn't stop there'. Having just opened the letter when I was out and having a very heavy bag of shopping (nothing exciting - cleaning supplies) this was the last thing I needed. Had been holding back the tears for about an hour by then and that was the last straw... walked back home sniffling and feeling rather embarrassed! :/
There's no way I could ever afford to get surgery privately either.
So a waiting game. I was so hoping that this would just go smoothly and I would have a semi fresh start... so I could pursue the career I've always wanted and could walk around in everyday life without feeling paranoid that my scars are showing.
So everything is up in the air again and I'm feeling pretty lonely and rubbish.
Night all, sorry for the moan xx
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