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OCD 1, Me 0

This post is about my OCD and some random things that came to me about it.  I have been writing down thoughts I have had about it for the last few months.  This started after I wrote the following as a status on Facebook.

I will not brush my hair

I will not brush my hair

I will not brush, oh dam

OCD 1

Me 0

This got me thinking about my OCD and how it affects me.  It sometimes feels like the OCD and me are fighting and I often loose, although I have a small victory every so often, which helps me to feel somewhat better.

Obsessive Compulsive Disorder is not just about being a neat freak and really well organised, although in some cases that can be part of it, but to a degree that is less helpful than it sounds.  In my case it is my own mind nagging me, sometimes almost all day.  Stress and anxiety can make my OCD flare up worse.  At times I get cross and frustrated with myself due to the OCD, making me even more stressed and the OCD even worse.

I have wasted hours of my life redoing things that were perfectly OK already.  Sometimes things just do not feel ‘right’ despite being told they are fine and even being  able to see for myself they are fine, they can still feel wrong.  At times I redo something over and over to the point it is like I am stuck in a loop and have to force myself out of it.

One way I have found that can help me to not get stuck in a loop in the first place is singing, although this only works with certain OCD rituals and not on a really stressed out bad day.  I sing to myself to distract me from the OCD thoughts or to make me feel less stressed.  It can help me to get through a task such as dressing or getting ready to go out.  Some people assume I am singing because I am really happy, which is often not the case.  Sure I do sing to myself when happy sometimes and when a song is stuck in my head, but I often use singing to block out the nagging in my own mind.

One of my worst rituals is my bed time routine.  On a bad day it can make bed time seem kind of scary for me, as I know it will take me far too long that day to get to sleep.  If I only have to do my rituals once before bed I call that a win.  However once asleep I generally do not have trouble staying asleep and sleep very well.

When I am in the middle of certain rituals and someone interrupts me it can mean I have to start again from scratch depending on the exact nature of the interruption and the stage I am at with the routine.  This can get very tedious if I am interrupted a lot.

I once saw a documentary on TV about OCD, one sufferer sick of people telling him to ‘just stop’ when it came to his rituals said it is like telling someone with a broken leg to just walk it off.  This is a very good analogy, if it was that simple to just stop, why would we still be doing it?  I do not want to be brushing my hair over and over to get it neat, to the point it gets greasy quicker than it should or checking the front door is locked three times before going to bed, but some days my compulsions are just too strong.

People who say to me ‘I can be a bit OCD at times to’ can get rather annoying when they are referring to the fact they like routine or are just a tidy person.  Most people have ways of doing certain things they prefer, but when I spent all morning getting dressed and ready to go out because I had to do certain things over and over again then it can sound a bit like a kick in the teeth.

OCD is a diagnosable clinical condition that can come with therapy and in some cases medication. However some people seem to think of OCD as a term for just being fussy or pedantic and make jokes to that effect.  OCD memes on social media also often make light of the condition and can help spread misconceptions about it.  For example ‘I have COD, it’s like OCD but the letters are in alphabetical order, as they should be’, which just totally misunderstands what OCD even is.

Then there are those who think that I can just go and get therapy for my OCD and it will go away.  Mental health therapy is not always that simple, and OCD therapy, at least on the NHS is very rigid and in my case hardly made a difference long term.  The only thing they seem to offer for OCD is Cognitive Behavioural Therapy, which is supposed to help reduce ritualistic behaviour by helping you to confront your obsessions and resist the urge to carry out compulsions, learning instead to tolerate the anxiety till it is no longer such a dominant voice in your mind.  However I was only allowed twelve sessions of CBT in total, and they kept trying to make them over the phone or online and not in person.  Also I have since been told that CBT for autistic people is often pretty ineffective, but the NHS seem to not like to treat both at the same time even though they are co-dependent conditions in my case, I guess funding works one name condition at a time even if you have conditions that can be hard to separate from each other and tell which is which at times.

All the nagging in my mind, the rituals and redoing things over and over can be mentally draining at times.  By the end of some days I feel very tired from having had my own brain have a go at me all day, however going to bed will then be a whole other set of rituals that will mean I sometimes take ages to finally get into bed.  Meaning that I am often still tired the next day and some days never seem to feel fully awake.  This is one of several reasons I do not feel able to work a full time job and come off benefits right now.

OCD is often a lonely and confusing condition when other people do not understand what you are going through, even when they try to understand, people often seem to not really get what it is like to live with.  I now use mental health chat rooms and sometimes find other people who have OCD which can be interesting and helpful, making it slightly less isolating for me.  I wish that I could have had places like this when younger.

I count myself somewhat lucky in that I do not have the extreme version of OCD where people think loved ones will die or get hurt if they do not do their rituals correctly and can have nasty visions of things happening to people they care about.  I gather this type of OCD is much rarer and often occurs in people who also paranoid.  However this does not mean my type of OCD is easy to live with and it is still a real condition with real problems attached to it.

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Medication

I have been on Paroxetine (often known as the brand name Seroxat) since I was thirteen, that is over nineteen years! I was put on it by my childhood psychologist for OCD. At the time I was pretty desperate for help so more than willing to try it. Slowly the dose was increased and I felt it was helping a little. However the pills only seemed to help short term. By the time I realised they were no longer helping the OCD it was too late, I was dependent on them.

Aged sixteen I was dropped from the children’s mental health services with no referral to adult services. This resulted in my medication not being properly reviewed ever since. I am supposed to have an annual review of my medication, but this seems to result in little more than asking me if am suicidal, if I still take them daily without forgetting and that is about it. When I was having a better period with my OCD my GP reduced the dose, then when my OCD was having a worse period they upped the dose again. This seemed to make no difference to my OCD at all.

I once ran out of pills for several days when at university (first time I was totally responsible by myself for my medication) and I felt very ill. I had a headache, felt sick, dizzy, saw coloured spots on and off in front of my eyes and functioning was tricky. I got more pills and within less than twenty-four hours felt a lot better. This proved that I clearly was dependent on the medication.

I have talked to more than one doctor about coming off the pills, but have been told they are one of the hardest of their type to ever come off, especially after so long. They are part of the Selective serotonin reuptake inhibitors (SSRIs) group, most often known for being anti-depressants. I am on the lowest dose possible now that I can be without any withdrawal symptoms which means that they should be having a less negative impact on me than they once were. However I still wonder if they are having any negative side-effects on me or if they did when I was on a higher dose. Having been on them so long though I am not sure what is down to the medication and what is not. One of the side effects listed for Paroxetine is insomnia. Ever since I was a teenager I have had issues with my sleep. Drowsiness another possible side effect is also an issue for me quite often. I used to put this down to the strong pain medication I was on for my hip pain, but since I came off them after my hip replacement I am still pretty drowsy a lot of the time.

In the UK SSRIs are no longer given to people under eighteen except in very rare cases. The NHS say this is due to concerns that the use of SSRIs could affect brain development in children. Also there is an increased risk in self-harm in the under eighteens taking it, although mostly in people taking it for depression. They also say pregnant women should not take it. Although I have no plans to have a child right now, what if I ever do? Coming off the medication would be extremely hard.

I have resigned myself to the fact I may well be on a low dose of Paroxetine for the rest of my life. I have no idea what effect that will have on me long term, if any.

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Lyrical

When I am struggling with emotions and feelings writing helps me sometimes.  I find writing lyrics can be helpful, especially when confused or heartbroken or sad.  It can help me to get my anger or sadness out in a safe way.   It helps me to explore my feelings towards someone or something.  I cannot go and yell at the guy in person in a lot of cases, so this helps.

I enjoy writing in various song styles and genres.  A lot of the time my songs end up coming out in ‘Goth emo’ style, but not always.  I am a huge The Rasmus fan, which is what a lot of my songs end up being a bit like, but some also turn out more like Train or other things.  I wish I could write music and put the tunes down on paper, although I do not actually think the tunes I have in my head are very good most of the time anyway.  Someone else can write the tunes one day if they wish.

I write lyrics for myself about very personal things, they are not written to be taken seriously as hit songs; they are just to help me.  I thought I would share a few of my songs though just to help explain myself a bit better to people and also I love to share what I have been writing whatever type of thing it is.

A lot of my songs are about love and relationships, like most songs seem to be.  These next ones are about my last long term relationship ending.

Silence of the Ghost

You don’t have a master plan

If you wake up tomorrow

You think you’ve won the game

You don’t see a future

You’re living day to day

 

I need something solid

That I can build upon

But you have no foundation

You’re crumbling to the ground

‘Cause you’re afraid of life

 

(Chorus)

So now you’ve gone and ghosted me

And just left me with memories

What am I supposed to do?

I have no way to get through to you

 

You don’t even know

What you’ve left behind

Do you know how much you hurt me?

Do you even care?

Or are you lost inside your mind?

 

(Bridge)

You’re a ghost and you haunt me

Bet you think you set me free

But you’re a ghost and you haunt me

(Chorus)

That’s what scares me most

It’s the silence of the ghost

It’s the silence of the ghost

 

Dreams/ Reality

There’s a difference between dreams and reality

But you don’t see

See the bigger picture

See the picture of me

Standing right before you

But you don’t see

 

I’m not what you need

You need someone who is ripped at the seams

Someone who has no dreams

But baby that’s not me

I want to have a life

Maybe be someone’s wife

 

There’s a difference between dreams and reality

This is something I’m learning

But I refuse to give up on my dreams

So I’m giving up on you

Then maybe I will see a new reality

 

Thief

You said all the things that I wanted to here

That I’m loved and you’ll keep me near

Was it truth, was it lies?

Was it part of your plan?

As you committed your crime

 

(Chorus)

You became a thief of the night

You stole my life

My heart, my soul are in your possession now

When you walked away

You took everything I need

I am no longer me

 

I can’t ask for them back

Since you went on the run

I can’t ask for the truth

You’re in hiding now

Since you committed your crime

(Chorus)

(Bridge)

 

I would say let the punishment fit the crime

But I think you’re already broken inside

Just like you did to me

Now I’m broken too

Since you committed your crime

(Chorus)

 

This next song is about when you are finally starting to move on from a painful break up.  It is much more hard rock than the other and the words in capitals are supposed to be almost shouted.

Break Down

I came back today

Back from time away

But it weren’t no holiday

It was a mental break

DOWN!

 

Although I never left my own bed

I wasn’t there inside my head

I was going out my mind

Thoughts were dragging me

DOWN!

 

I have no one to blame

I drive myself insane

Living inside the pain

The pain that come from having known

YOU!

 

Today I finally felt OK

I woke up and got out of bed

Decided to get out of my head

Now I’m living just for me

FUCK YOU!

 

This song has parts about several men I have met along the way, but is mostly about one specific person.

 

Over You

You told me you needed someone

But after you had your fun

You said you’re too broken inside

To take any-more

Well I’ve been broken since the day I was born

I’m totally twisted and torn

But that don’t mean I want to be alone

So don’t you dare use that excuse

 

Why can’t you just tell me the truth?

(Chorus)

 

I know I’m supposed to hate you

But you know I don’t

If I did it would make it easier

For me to move on

But I’m not ready to be over you

Not over you quite yet

 

I think I knew from the start

But I’m slightly insane

So I played along with your game

Hoping to make it real

 

It still hit me like a hammer when you left

I should have seen it coming

But it’s hard when you want it so bad

Now I feel like the guilty one

But that really should be you

(Chorus)

 

There’s a deep emotion I get when I think of you

I both hate it and love it

But I’m not ready to be over you

Not over you quite yet

(Chorus)

 

This song has nothing to do with love and is about my mental health, partly my OCD.

 

My Darkest Sin

There’s a darkness surrounds me

It comes from within

I try to fight it

But I have to give in

So I end up committing my darkest sin

 

(Chorus)

Sin, sin, sin, what do I win

When I commit my darkest sin

I win silence from the voices inside my head

I win back the silence of the night

The silence of the night

 

There’s a confusion surrounds me

I don’t know what is right

I try to be part of this world

But it’s always a battle

Against my own sin

 

(Chorus)

(Bridge)

I am only human

I will often fail

I can’t live up to what is always expected from me

 

There’s a darkness surrounds me

It’s dragging me down

(chorus)

 

This song was written when I was feeling very low and lonely.

The Lie

You gotta’ try, try, try everyday

Even though you want to die, die, die in so many ways

You got to pretend that you are OK

Don’t let them see your vulnerability

Or they’ll take advantage one of these days

 

(Chorus)

I feel numb, numb, numb, nothing inside

There’s a void inside where the love should be

I try to fill it, but it feels an impossibility

I can’t seem to find what I need

I come close, but it’s not meant to be

 

You gotta’ lie, lie, lie everyday

That you don’t wanna cry, cry, cry is so many ways

You make out you cope on your own

There’s no way they’d understand at all

 

(Chorus) 

(Bridge)

You ask yourself why, why, why it happened again

You gave it your all, but it wasn’t enough

Still you must try, try, try

 

(Chorus)

 

If others can fake it so can you

But for how long can this go on?

 

 

This last song is about trying to fit in and being true to myself.

Being Me

I have tried everyday

I have tried to be regular, normal

Gave it my best, gave it my all

But eventually I had to fall

They all rejected me

 

(Chorus)

I can’t be something I’m not

So I’m going to give it a shot

At being who I truly am

Without no massive plan

I am being me

 

I have finally found

What I want to be

But I think I left it too late

I’m way past the starting gate

They just locked all the doors to my youth

 

(Chorus)

 

I refuse to give in

I will finally win

I will find a way

To make tomorrow my day

I don’t care what they say

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Some things I hate

I Hate…

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OCD, on certain days it really controls me and seems to take over. My worst traits at the moment are often to do with my hair having to be perfectly neat and my bedtime routine. On days when I am really struggling with my OCD I can be afraid to go to bed. OCD nags at me and gets exhausting at times. I am glad not all days are as bad as others.

Being autistic at a confusing level. Being Asperger or high functioning level means that I am more than aware I am autistic, but still seem to have very little control over it, so I just know I mess up a lot. Being aware of my faults, but unable to do much about them is very frustrating.

When I clearly have said something wrong and upset someone, but am not quite sure what I said that was wrong. Knowing me I spoke my mind too freely, said too much or I have been told I can come across as somewhat self centred, but I never mean to. Then if you ask someone what you did wrong not knowing sometimes makes you appear even more self centred.

My anxiety issues with people I care about. I worry too much if they are happy or content when with me and sometimes ask if they are OK too many times, till they get annoyed with me. When alone I can annoy myself by worrying if they miss me as much as I miss them or is it a relief for them to have a break from me? I am often unsure of the right balance between giving someone space and showing I care.

My mind in one of its frequent over thinking states when I am alone. I end up getting emotional or anxious, over dramatising things in my head. I can work myself up into a sad or angry state.

How tired I feel a lot of the time. Day time naps no longer seem to help as much as they used to. Often I feel drained or lethargic. Is it my OCD and anxiety that cause it?

People who say things like ‘you’ve done so well considering’ or ‘you’re so brave’ or give you that look as if to say ‘ah bless the special needs person’. I know they mean well, but it is patronising. How do they know that actually for me I am having a bad day and on a good day I can actually pass them by unnoticed and do not come across as special needs at all.

How messed up my posture is from my hip issue. Years of limping and using walking aids such as crutches have left me with shoulder, neck and back problems. They can really hurt at times. My spine now has a slight curve and I am often rounded at the shoulders. On bad days it can cause me to walk somewhat wrong and give me pain in my feet. I hate knowing that as I age this might get worse and I could be one of those bent over old people you see that can hardly stand upright. I do exercises most days that were given to me by physiotherapy, they do not take long and do help somewhat with the pain, but they will never cure it and are tedious to do when I am not in the right mood.

People who say getting a job is easy if I really wanted one. They do not know how hard I tried to get paying work. They should try it with autism, mental health issues, benefit money issues and living in a small seaside town.

Depression days that are so crippling now and then I can not even dress and leave my flat. These are the days when my mental health issues win. I let people down, spend too much time alone and then end up annoyed with myself. I am too low to fully function and my OCD too bad to dress fully.

I am not saying things are always this bad, but during bad phases these are the things that get me down. I think writing them down and sharing them with others helps me feel less anxious about them somewhat.

OCD and how it is not funny if you really have it

OCD, I know I have talked about this before in other posts, but it recently became clear that I need to discuss it again and this time from another angle.

Yet another post about OCD on Facebook came up the other week.  ‘These three targets all look the same to people without OCD, click the link to find out how OCD you are’, or something along those lines.  I have OCD and the targets still looked all the same to me.  I commented on my friends post that this was the case and that I thought posts along these lines stereotype and trivialise my condition.  Another friend accused me of trying to start an argument when it was only a game.

I have seen too many posts along these lines about OCD being a perfectionist neat freak thing that can be judged by silly games.  I see memes and jokes posted around social media quite often that are starting to make it seem like OCD is some kind of joke condition.

OCD is now used as a phrase to describe neatness or fussiness. People often say ‘oh I am a little bit OCD’ but, as Connor Heapy wrote in the Independent newspaper ‘Obsessive-compulsive disorder (OCD) is a debilitating condition characterized by unwanted intrusive thoughts and repetitive behaviors or mental acts. Although OCD is often associated with cleanliness and orderliness, it can manifest in a variety of ways. Some spend hours each day worrying about whether they have committed a paedophilic act while others are plagued by the thought that they may have caught HIV from their toothbrush, towel or phone’.  For me during a bad phase OCD can be a disability, stopping me from living my life a fully as I would like.

It is exhausting both mental and physically.  I get up and down over and over to get comfy sometimes and fiddle with my clothing or cushions or hair till I feel things are ‘just right’.  I have to listen to my own head nag me all day on my worst days.  I have had full on arguments with family members over OCD issues, and even argued with myself and the world around me at times.  I have been known to yell at inanimate objects at times.  It just spills out and I cannot help it.  You can learn to manage OCD up to a point, but it never fully goes away.  There is no full rest-bite from it.

For me OCD is about a feeling.  Getting things ‘just right’ does not always mean things have to be perfectly symmetrical or straight, sometimes I do not mind mess, but in my flat it is an organised mess.  My OCD also gets mixed up with my autism, so it is complicated.  OCD is not as simplistic as a lot of these social media posts make out.  My own head is full of mess so I like to be able to order and control the mess outside my head.

I never post jokes, memes or silly games on disabilities online and I ask other people to do the same.  Please respect my right not to have my disability made into a joke.  I can be a fun person and enjoy a laugh, but not at the expense of those already suffering.

downloadGawd, well I cannot tell any difference and I have OCD.

i-have-cdo  A very common meme I keep seeing

My Experiences of the NHS Mental Health Service

 

I would like to share my experiences of the NHS mental health services.  I have found it a patchy service at best, with very little flexibility.  I am not saying that you should not seek help with mental health issues, there are some positives in the mental health system, but it is far from an ideal service and needs a lot of changes to make it work better for more people.

My first experience of therapy for mental health came aged eleven or twelve when I was referred by my GP after my mum asked.  I think she had to ask more than once.  I was diagnosed with OCD by the psychologist.  I had talking therapy once a week, often with my mum.  I got a new psychologist later who put me on medication for my OCD.  I am still on that medication.  I think it used to help, but no longer think it does anything for my OCD.  No doctor willing to properly review it.  One doctor did agree it probably did nothing for me now as I would have become immune to it and put me on a much lower dose as you can’t simply come off it. I know it is one of the hardest medications to come off and the side effects of not taking it for three days once when I ran out at university were awful.  I do not know if the medication has any side-affects as I have been on it so long I am no longer sure what is me and what is the medication.  It could be one of the reasons I am tired so much and would love to be able to try life without it, but right now that does not seem possible.

I started group therapy once a week for a couple of terms.  I am not sure if it was helpful or not, but I liked going as it got me out of school for the morning.  The trouble was I did not fit in with the others very well and some of them could have been a bad influence.  Some of the girls tried to talk me into smoking with them during the break, not that I ever did.

Autism, more specifically Asperger’s syndrome were raised as something I may have.  I can’t remember if it was my mum who brought it up or if my psychologist mentioned it first, but I remember it being discussed.  However I never was sent for testing, which I do not understand as I clearly had major issues and think it would have helped a lot to have a formal diagnosis.

At the age of thirteen I left my first secondary school as I was being bullied very badly and the school was not really addressing it properly, nor were they helping me with my mental and physical issues which were clearly getting worse.  I ended up spending a term in a new education program for children struggling with school run by the childrens mental health services.  It was just a classroom in the mental health services building and not really a school, but it was better than nothing.  Then I ended up in a special needs school, supposedly for those with physical disabilities, but I think my hip was just an excuse and really it was the fact that no other school would have me and the education authority did not know where else to put me.  I think my report from my previous school may have put other schools off.  I admit I had become very difficult to teach by this point, having become very angry a lot of the time and not really being able to handle it.

I had anger management therapy for a few sessions with a mental health nurse.  This was based around mindfulness.  It helped me a little bit, but mindfulness only works if you can feel the anger coming before it is too late, which often I cannot.  The trouble is I tend to go from fine to angry in about a nano second, which gives me no time to put the mindfulness in place.

When I turned sixteen I left the children’s mental health service and that seemed to be that.  I was not transferred to adult services.  Some years later I asked my GP for support with my mental health and I was offered counselling through my surgery.  It was not very helpful as I did not get many sessions and I do not think the guy really understood my problems.  A few years later at university I had some counselling that was more helpful to me.  I think it helped that she was used to working with students so it was more tailored to my situation at the time.  She taught me about mind maps, which helped with my coursework to make it seem less daunting and stressful.

Since then I have gone to my GP for support with my mental health and been told about the anxiety and depression service.  I have tried this service twice, once for depression and once for my OCD.  As a self referral service I found it hard to get an appointment.  Last time I had to ring them three times before they answered the phone and they totally ignored my emails.  For depression this is not helpful, a depressed person is not very likely to keep trying once they fail to get through.  Once you do get an appointment you are told you get twelve sessions mostly over the phone.  I found phone therapy very unhelpful as it meant I could sit at home and wallow in my depression or lie about how much of the homework I had actually done.  I found the phone calls quite uncomfortable and would just say what I thought he wanted to hear to get it over with as quickly as possible.   When it came to therapy for my OCD I found it pretty much useless.  The only kind of therapy they seem to offer is CBT (Cognitive Behavioral Therapy).  At first the program seemed to be helping a bit, but I soon realised it only got rid of one OCD trait to replace it with another.  The therapy never looked at the causes of my OCD behaviour, just the individual symptoms.  Despite specifically asking to have only face to face appointments, I was soon given only phone calls, which were not very affective.  The next stage was to sign me up with an online program that only therapists could add you to.  Some of the exercises on the program required that you logged in daily to the site.  I did tell my therapist that I was in the process of moving and had no internet in my new flat, but despite this she kept on at me to use the program.  Some of the exercises were simply impossible to do in the local library where I often access the internet.  In the end I gave up as even the exercises I could do seemed to not be helping.  I have since been told that CBT will not help me anyway as I am autistic and it hardly ever works for people on the spectrum, so that was a waste of time.  No other service is offered for OCD on the NHS in my area according to my GP.

Last year I was finally diagnosed as High Functioning Autistic or Asperger’s after my mental health assessment flagged it up as something to get tested for.  I was about thirteen when it first came up as a possible diagnosis and it took till I was thirty-one to be tested!

I find it hard to get a GP or anyone else in the health service to take my mental health problems seriously.  I have never self-harmed or been suicidal which maybe one reason I get so little support, despite finding my anxiety and OCD crippling some days.  I have never had a psychologist as an adult.  I did get some support from one GP after I cried in an appointment and asked to sign on as too sick to work.  She got me a mental health assessment, the first and only one I have had as an adult.  This did help as it led to some positive changes in my life.  However I think it helped that I had changed surgeries not long before this as my previous surgery had always seemed to dismiss my mental health problems.

I think mental health services need to be more flexible to meet a patients needs.  People end up costing the NHS more if they are left till they are so ill they need hospitalizing or longer term care.  CBT and mindfulness therapy is proven to work well for a lot of people, but it is not going to suite everyone, yet they seem to be the only things the NHS offer.  Even if it does help, you get so few sessions that as soon as you make a tiny bit of progress the therapy runs out and you go back to square one.  I think the NHS would save money if they invested in better mental health services, as some physical symptoms can be brought on by mental health issues being left untreated.

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For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.