I’ve realised something this evening, it might take a bit of explaining so please bear with me…
I’m in the UK and I was diagnosed with moderate OCD 3 years ago. My diagnosis makes sense to me, suddenly lots of childhood stuff is understandable. What’s not understandable, is how I got to this point.
I started psychotherapy a few years ago due to feeling unhappy and anxious. After a few months my therapist wondered if I might have OCD, which she didn’t treat, and suggested I look into it. So I self-referred through my GP / council talking therapy service with suspected OCD.
I was offered an assessment, told I met the criteria for a diagnosis of moderate OCD and was given 10 sessions of CBT through the NHS.
Now I live my life knowing I have OCD and have had some basic treatment for it. I continue to work with a new therapist, who has a specialty in anxiety, to help me along the way. I’m high-functioning, as I often forget I have OCD and when I remind myself things make sense again.
In all this time, through all this therapeutic journey, nobody has ever actually told me what OCD is. I’ve only been told it’s something I have. I’ve had to research it myself. I’ve read lots about it, but I still don’t know if it classifies me as neurodivergent, or mentally ill, or disabled, or if it’s just some system I’ve learned for dealing with anxiety. Should I be telling people? Does it affect me more than I think?
I’ve touched on this subject before with some OCD groups or charities and been met with “don’t overthink it” or “we can’t answer because you’re seeking reassurance”. It’s not reassurance if I genuinely don’t know!
Does anyone else feel this way? OCD doesn’t define me, it’s something I have, but can you help me answer how having OCD “legally defines” me in the UK?
Thanks for reading.
Written by
Hedgehog25
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It's a mental illness. It sometimes occurs in neurodivergent people, but having it doesn't mean you're neurodivergent.
It is disabling - just how disabling depends on how much it has you in its grip, and how much you've managed to deal with it.
In many ways, it's instinctive behaviour taken to an extreme. Conditioned learning works like this.
Suppose that a child approaches a dog and is bitten. The child learns that dogs can bite. Normal behaviour is to be careful when approaching strange dogs but to understand that though dogs can bite, they don't usually do so. In fact most dogs are friendly.
But the child may develop an aversion and fear of all dogs. And conditioned learning doesn't always follow a logical path.
Suppose that you wear a particular colour and something goes wrong for you - it could be an accident, a row with a partner or friend. The two things have nothing to do with one another - but the brain makes the connection. And that makes you avoid wearing that colour.
Or perhaps you do things in a particular order, because something has gone well when you have done them this way, and your brain associates the two and is convinced that you must go on doing things in that order, so that things continue to go well for you.
Taken to extremes, what constitutes normal behaviour becomes abnormal. Many people have a little of this - for example wearing their 'lucky pants' when going for a job.
It's if it takes over your life that it becomes classified as OCD. But OCD takes many forms. The brain makes all sorts of connections and can be highly suggestible. Most people are conscious of germs, but to modify your behaviour so that your whole life revolves around keeping germs at bay is OCD.
It's a complex disorder, and as I said it takes many forms. It often attacks people just where something matters most to them - their relationship with a partner, their children etc.
Normally thoughts float into our brains, and normally they float straight out again unless they mean something to us. But OCD makes random thoughts 'sticky' - it makes us attach meaning to them, particularly if they are unpleasant, and that makes them stick in our brains and we do all we can to push them out. And the more we do that the more they stick. And that makes us afraid that we really will do something horrible - push someone onto the railway track, or hurt our dog etc.
Often this makes us demand reassurance. Am I really a bad person? Am I really likely to push someone onto the railway track or hurt my dog? And if reassurance is forthcoming, it's not enough, and we demand it again - and again - and again.
Most people also have thoughts of 'Did I leave the oven on? Should I go back home and check?' or 'Did I leave the back door open? Should I go and check?' And then they remember doing it, and don't give it another thought.
But having OCD can make us go back and check. And check - and check again. Again, demanding reassurance which doesn't satisfy.
Does this cover OCD? Not a bit of it! But it outlines some of the ways OCD manifests itself. It doesn't define us, as you say, but it can take over our lives and cause serious disability.
If having OCD affects your ability to work, then you should be entitled to benefits. The new benefit is Universal Credit, and if you want to apply, it might be worth going to a local disability or independent living support group. They can explain to you how the system works, what you need to do, and how best to present your case.
As I said, OCD is treated as a disability according to how it affects your life. It's difficult to explain to someone who hasn't got it how it can get you into its grip and that it's a struggle to free yourself of it. But if you need support, whether that's benefits or accommodation at work, you are entitled to it.
I don't suppose I need to tell you that keeping fairly busy without overdoing things is a good antidote to OCD! It helps you forget your OCD. Having positive purpose in your life matters.
I hope this helps - I have quite a lot of experience with having OCD and if you have any more questions I'm happy to answer to the best of my ability.
I've often wondered this myself. Is it really a mental illness? Is it a disease? Is it just a chemical imbalance in the brain? From what I've been able to determine, no one really knows. The issue is that looking into the brain can be invasive and performing experiments on people unethical. Unfortunately, what we know about the brain mostly comes from people who've had it damaged. It's a bit like learning how a clock works by smashing parts of it and seeing what doesn't seem right anymore
I've gotten to the point though that it really doesn't matter. All of these identifiers are just labels to a thing we really don't understand. It appears to be partially body (brain chemicals and whatnot), mind (thoughts getting attached to feelings), and spirit (feelings of low self worth, not living up to ones potential, etc.). That is why it is so difficult to treat. It isn't an even split between those 3. It varies from person to person. That's why, while the treatments are similar, what is needed varies from person to person.
People often feel like they need to identify with something to understand themselves, or to feel like they are part of something "bigger". The truth is that you are bigger than any of those labels. The cannot describe the whole "you".
This is at least where I've ended up on the issue. I hope this will provide some insight. At the very least, one can say that having OCD is one hell of an adventure
The chemistry of the brain is still a mystery in many ways, including to those who know best about it (the neuroscientists).
Most mental illnesses (and I include OCD) are known to be caused by a cocktail of genetic predisposition (though that isn't properly understood), faulty brain chemistry (I think most of us recognize the OCD loop - it's as though your thoughts are on a loop which goes round and round, like a hamster on a wheel, not getting anywhere), and traumatic life experiences.
I agree about people too often needing to label themselves in order to feel they have an identity. Then insisting on defining themselves solely by that label.
There is a diagram in the book Overcoming Obsessive Compulsive Disorder - it consists of a big letter 'I'. But it is made up of lots of little letter 'i's. There is more to each of us, as you say, than one label or one condition.
OCD is a mental health disorder in which a person gets trapped in a cycle of obsessions and compulsions. The obsessions are intrusive thoughts, urges of impulses that the person attaches meaning to and feels great distress from. The person does mental and/or physical compulsions to negate the distress but this reinforces the obsessions and the cycle keeps repeating. OCD attacks what a person values. OCD is ego-dystonic, meaning that it tries to convince the person that they will act against their values. People get caught up in thought-zction fusion which means they believe having thoughts equal actions. For instance, I had a thought about a kid so I am a pedophile and will harm children. Most people with OCD realize at least to some extent anyway that their thinking is irrational but the distress takes over. The distress can be any distressing feelings including fear, anxiety, shame, guilt, disgust, etc. The person is seeking certainty and isn’t satisfied with anything less even though certainly doesn’t exist.
OCD is on a spectrum of severity which can be assessed by an OCD Specialist going over the person’s YBOCS or DOCS test. These are assessment tests. The OCD needs to occur for a minimum of one hour/day and interfere in the person’s life to meet the clinical criteria for OCD. Some people spend all of their waking hours in the OCD cycle and are incapacitated.
OCD is part biology and part learned(negative reinforcement). There can be a genetic predisposition for it and there are many different biological components associated with it. There are different neural circuits which are implicated as well as immunology and inflammation. Brain hormones may be involved as well. There are changes seen on fMRIs of the brain but the question remains, which came first, the OCD or the changes. fMRIs after effective treatment show the brain functioning has returned to “normal”.
It is common for people with OCD to have a low tolerance for uncertainty, perfectionism and a low distress tolerance.
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