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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.

 

Music and Me

“I think music in itself is healing.
It’s an explosive expression of humanity.
It’s something we are all touched by.
Everyone loves music.”
~ Billy Joel ~
Music seems to be one of the few things that people can agree on as being a good thing. Not everyone has the same taste in music, but most people seem to tolerate other music tastes and styles far more readily than they would other things. How many wars are started over music? None that I can think of (feel free to correct me if you think of one). Yes a few riots may have started such as Mods and Rockers and Punks, but that was more over the culture around the music, not the music itself. This is one of the reasons I think music is very important, it brings people together. It gives people an outlet to express how they are feeling in a safe way.
Music has always been an important part of my life ever since I can remember. When I struggled at school to make friends music was something I understood and could be a part of. It has helped me to join in conversations and make friends. I have often struggled with my emotions, but music has helped me to understand myself somewhat better with the ideas and feelings expressed in songs.
These are some of my favourite songs which help me when struggling with my mental health or during difficult times.
Don’t Let Me Be Misunderstood- Nina Simone

http://www.youtube.com/watch?v=9ckv6-yhnIY For me it has to be the Nina version as she sings it with such emotion
I have always felt this song could be about me and my mood swings.
‘Ya know sometimes baby I’m so carefree
With a joy that’s hard to hide
And then sometimes it seems again that all I have is worry
And then you’re bound to see my other side

But I’m just a soul whose intentions are good
Oh Lord, please don’t let me be misunderstood’
When depressed I can have mood swings, where my mood can change very quickly. I can go from carefree and over the top happy to very down and worried about everything in the space of only a few minutes. I can get very angry at times and take my anger out on those around me including those I love. I do not mean to take it out on others and hope that they understand that I am just struggling with how I feel.
Ten Black Roses- The Rasmus 


The song sums up depression well for me.
‘Life is like a boat in the bottle
Try to sail, you can’t with no air
Day by day it only gets harder
Try to scream but nobody cares
Through the glass you see the same faces
Hear the voices play fade a drum
When your life’s a boat in a bottle
You’re surrounded, drifting alone’
Depression can feel for me like being trapped behind glass, stuck in the same place day after day. Like I am getting nowhere fast sometimes. I try to talk to people about things, but it can feel like nobody cares with the same people just ignoring my cries for help. No matter how many people I have around me when depressed I feel very alone.

Don’t Let Me Get Me- Pink

This song sums up how I feel about myself sometimes when having a bad time.

Don’t let me get me
I’m my own worst enemy
Its bad when you annoy yourself
So irritating
Don’t wanna be my friend no more
I wanna be somebody else

Sometimes I know I am not helping myself, but I can’t seem to stop sabotaging my own life. It can feel like my own mind is against me. I annoy myself with my OCD a lot.
Something Beautiful- Robbie Williams
When yet again single I find this song seems to understand how I feel.
If you can’t wake up in the morning
Cause your bed lies vacant at night
If you’re lost, hurt, tired or lonely
Can’t control it, try as you might
May you find that love that won’t leave you
May you find it by the end of the day
You won’t be lost, hurt, tired and lonely
Something beautiful will come your way
I have spent time feeling very low about being single and worrying I will never find that special someone. I am not so good at going to bed when alone as my OCD and anxiety can be worse then, so when I eventually do get to sleep, I can struggle to get up in the morning. Trying to find that love that won’t leave me has led me to spend many a wasted hour of my life.
Cab- Train


How heartbreak felt for me when my first love left me and how it has felt somewhat since.
This new rhythm I pursue
Is just my getting over you
Telling myself that I need to

The days are better, the nights are still so lonely
Sometimes I think I’m the only cab on the road
This is about trying to distract yourself from the feelings of heartbreak and loneliness. I took on new volunteer jobs partly to give myself something to get up for each day and help me get over the past. It helped me with the day times to be busy and out of the house, but the nights were the hardest for me. It took me a long time to not feel sad or lonely at night about things. Sometimes you feel like you are the only person who ever felt that way, even though you know you are not really.
Not Like the Other Girls- The Rasmus
I have often felt very different to other girls, especially when I was at school and always dreamed of a man who would rescue me and take the pain away.
She’s fading away, away from this world.
Drifting like a feather, she’s not like the other girls.
She lives in the clouds and talks to the birds.
Hopeless little one she’s not like the other girls I know.
I have often retreated to my own world inside my head that I know is not real. I have been known to talk to birds, flowers, all kinds of non-human things as I can then have a conversation that goes the way I expect and not freak me out by going in a direction I never expected. (Although I have got better over the years at real conversation and did this more as a child and young adult.)
No more blame, I am destined to keep you sane.
The guy is going to look after her and make things better. He understands her issues. I always hoped a man would understand and try to help me. If only I could find the right man my problems would not be so bad. This is kind of my Gothic fantasy song about the perfect love for my messed up mind.
Somethings Coming- West Side Story
A song that gives me hope that things are going to change for the better soon. From one of my favourite musical films.
Could it be? Yes, it could
Something’s coming, something good if I can wait
Something’s coming, I don’t know what it is
But it is gonna be great
I just have to wait a bit longer and something good will happen to me. Patience has never been a strong point of mine, but it reminds me that waiting can be worth it.
He/ She Danced With Me- The Slipper and the Rose
Another fantasy song about love. As a child I adored this song, I mean what girl does not want to be a princess for at least a day?
Though this lovely night was only a fantasy
And I know tonight is all there will ever be
Dancing in his arms forever
My heart will never be free!
Dreaming of the night he danced with me

Most Perfect loves are only a dream or fantasy which this song sums up well. You never truly have a free heart once you have had that first love, even if you do fall in love again. This song and the film it comes from helps me to escape reality for a while and have my dream.

Parachute- Train
My favourite pop/ rock love song.

when the world gets sharp and tries to cut you down to size
and makes you feel like giving in
oh, I will stay, I will rain, I will wash the words and pain away
and I will chase away the way we push
the way we pull
you’re beautiful

I’ll open up and be your parachute
and I’ll never let you down
so open up and be my human angel
and we’ll only hit the ground
running

I like the sentiment of this song, how he will never let her down and always be there for her no matter what. It helps me feel like there is that someone out there for me who will wash away the pain and help me to feel beautiful again.

Gabriel’s Oboe- Marricone

This is one of the most beautiful tunes I have ever heard. There are no lyrics for it being a classical tune written as the main theme for the film The Mission. I had not seen the film the first few times I heard this tune, but it did not matter as the music is so moving by itself. I find the tune both sad and uplifting at the same time. The part with the choir sounds like ascending into another world, a fantasy world perhaps or maybe the heavens.

I’m Mentally Ill, Ha, Ha

‘I am totally mental, the men in white coats will be coming to take me away any day now.’

‘Talking with me for while is enough to give anyone depression.’

‘If you think you’re mad, I’m totally bonkers.’

Those are some examples of how some people have reacted to me when I told them about some of my mental health issues. I am not that surprised at the responses, but I am disappointed. Some people just do not take mental health seriously and see it as a bit of a joke. Someone even once said to me that a lot of people use mental health as an excuse, to get away with being more selfish or lazy!

Out of all mental health conditions I have experienced for myself, depression seems to one of the most trivialised and dismissed. The NHS Choices website states that ‘Some people still think that depression is trivial and not a genuine health condition. They’re wrong. Depression is a real illness with real symptoms, and it’s not a sign of weakness or something you can “snap out of” by “pulling yourself together”. People often seem to miss use the word depressed, saying that they feel depressed, when they actually mean they feel very sad. Real depression is ‘when you feel persistently sad for weeks or months, rather than just a few days,’ NHS Choices website. When I am depressed I feel like my whole world is collapsing around me and I cannot see the point in trying to do much at all, even getting dressed or washing seems pointless. I think why bother, it is not as if anyone will notice or care. Some people say things like ‘I had depression, but woke up one day and decided the depression was not going to win and I was going to get on with my life’. I know people who say things like that are trying to be helpful, but it just makes me feel worse, like I have failed yet again, as I am unable to flick a switch in my brain and not be depressed. People who say that clearly either never really had full blow depression or they were at the end stages of it anyway. When someone has depression unless you are a mental health professional who is actually that persons assigned councillor or therapist, offering advice is normally the last thing you should be doing, as it will probably not help much and could make the person feel worse. I would rather people just said that they care, they love me, they are there for me, they are not going to abandon me and to maybe offer me a hug.

Obsessive Compulsive Disorder is another condition to get silly reactions. I get the ‘just try to relax and not think about it’ one and I get the ‘everyone has routine and ritual that is just part of being human’ one. If it was that easy not to think about it, I would not suffer OCD in the first place! I agree, everyone has routines up to a point, but not ones that make this little sense and that slows you down to the point you are late for things or even miss them altogether. The one I hate the most though is ‘I’m a bit OCD’. No you are just organised, or a tidy person or just really like something. The charity OCD-UK explain it very well on their website:

‘As understanding and public awareness about Obsessive-Compulsive Disorder has grown, so has the use of the term ‘OCD’ as a description for some kinds of behaviour that are not related in any way to the actual condition. When people use the terms ‘obsessive’ and ‘compulsive’ incorrectly, it leads to misunderstanding about OCD and belittles and trivialises the true suffering that the disorder can bring. As the internet and social networking websites have become more widely used, there has been an ever-increasing trend for people to refer to themselves as being a ‘bit OCD’. However, these obsessive or compulsive quirks, that last a brief moment, and rarely cause distress or any anxiety, do not warrant the label or a diagnosis of Obsessive-Compulsive Disorder, which can actually leave a person debilitated for hours at a time.’

The responses I get for autism are generally not too bad. People say that they either could not tell at all, or that they guessed as much, but it really does not bother them. I do get tired of people assuming my maths skills must be fantastic, as they are not very good at all. I think I might even have dyscalculia which is a learning difficulty with numbers and maths concepts (a bit like dyslexia for maths). As one blogger puts it ‘Asking if we like math, computers, or numbers because we’re Autistic is like asking a Black or African-American if he or she likes watermelons or rap music because he or she is Black or African-American.’ There was the time I was in a chat room and a person who works as a classroom assistant with autistic children said ‘they are all such lovely children’. Firstly she should know better than to call all autistic children they as if it was a race of people and secondly I honestly don’t think I always was such a lovely child. As with everyone else on the entire planet autistic people are a varied bunch, some lovely, some not so lovely and a lot of the time it has nothing to do with the autism.

When some people make a joke response to mental health I realise that some do this out of a sense of discomfort to try to make light of a topic they find very hard to discuss seriously with others. They themselves might have experience of mental health and still not feel like they can discuss it openly. However it is not a good idea to make a joke about mental health as a first response to someone who tells you they have issues. It can be very hard for people with mental health issues to feel that they can discuss them honestly with anyone, so the fact they feel they are ready to talk about them should be taken seriously. You should listen to them, it may help you understand the person better.

The other thing that gets me is having watched one documentary or met one person with the same condition people then think they totally understand you. Yes they may have some idea of what the condition is, but mental illnesses tend to vary from person to person a great deal. For example with my OCD I do not wash my hands over and over, but after one documentary showed a woman with OCD washing her hands excessively till they were red raw, for a long time after people kept asking me if that was something I did. When someone tells you they have a mental health condition please be sensitive in your response to them and think before you say anything.

Links:

NHS Choices on Clinical Depression 

OCD-UK on What is not OCD!

15 Things You Should Never Say To An Autistic blog