I have OCD, but not a 'clean freak' - AMA

[ItalianRed]

Hi,

A couple of years ago I was officially diagnosed with OCD, but not everyone understands this type of the disorder.

I don't have an obsession with cleaning, anti bacing everything and I don't need to have my clothes laid out in a certain way etc. Although I do have some typical OCD traits, mine are much more about repetitive, often very dark thoughts. It can be utterly debilitating.

Anyway, ask away.

My OCD is very much the same as yours, although I got through waves of fear over contamination of food.

I think the misconceptions around OCD are ridiculous.

@Francescaisstressed, they really are.

For years I wondered what was wrong with me and just put it down to my depression and anxiety, but then one day I read an article on this type of OCD and just thought, yep, that's me. Even after that it took a long time for anyone to really listen. My therapist back then insisted it wasn't that and basically just gave me a tick box questionnaire, with what I would call "typical" OCD traits. "Do you obsessively count, clean, organise?" Mine isn't like that at all.

Thank goodness I found a therapist who understood.

Are you on meds? Do they help? :)

Hi @ItalianRed thanks for this AMA. I also have OCD and am currently an inpatient in hospital in an OCD department. There are 7 patients at the moment and only I have contamination issues (and therefore obsessively clean etc). You should see the messy rooms of the other patients . People don't understand OCD at all. Harm OCD is a bigger type (dark thoughts about harming someone) and have nothing to do with order and cleanliness. So I know how frustrating it can be.

I have OCD and my home and office are an absolute hovel. I hate the misconceptions about this debilitating illness. Don't have any questions, but I hear you!

My daughter (22) has OCD and although she has contamination obsessions her room is an absolute tip because she can't touch half the stuff in it. She's finishing her masters project so I don't want to interfere til she's done but should I leave her to deal with it when she's ready or go in with bin bags?

Are you able to work and function reasonably normally?
And do you know what may have triggered it?

Same here. I basically self-diagnosed myself with OCD after my DS was born after suffering months of distress which I had no name for but struggled to belive was just generalised anxiety. Then a MH therapist said she agreed with me that I have OCD and childbirth made it worse.

I too have phases of fearing food contamination but my main thing is fear of harm coming to my loved ones, especially my children. I also have distressing thoughts about harming others or shouting out obsceneties in work meetings or similar situations. I also have social anxiety and feel almost paranoid about people judging me or talking behind my back. The school playground is particularly hard from the point of view of social anxiety.

It goes in waves. I'm on a low dosage of Fluoxetine and find it helps enormously. Something else that really helped was group CBT specifically for OCD. Even so, If something destabilises me, for example going somewhere away from home, I can relapse and become quite distressed. At least now I've learnt to recognise these phases as due to my OCD and I know they will pass sooner or later. I'm able to work full time and function pretty well a lot of the time but my social life and ability to maintain friendships is affected. I also have a very difficult relationship with my body image.

I was mis-diagnosed with OCD. I also was not a clean freak or the typical presentation. Turns out I actually have ADHD and 20 mins after I took my first ever ADHD medication all my intrusive thoughts, health anxiety and general anxiety pretty much dissappeared.

I really want to understand. Is it that you have repetitive, intrusive thoughts that stop you being able to function? Do you know how you come to have it? How do you manage it?

I missed this thread when you started it @ItalianRed and I’m sorry I did as you might not want to keep it going 3 months down the line!

I am frustrated on behalf of everyone who struggles with OCD in all its forms, that it is so often trivialised in everyday parlance when people say things like “I’m a bit OCD” as shorthand for liking a clean house. This simplification of OCD often perpetuated by some of the “entertainment” programmes about obsessive cleaners. The fact that it is extremely common doesn’t mean it isn’t a real challenge and very tough.

I’m really interested in where you are with your OCD and what you think has helped or is helping you the most? I am a CBT therapist (so I like to learn from people’s experience of OCD) and, from my perspective, I see many more people who suffer from intrusive thoughts that appear to have no obvious compulsion, rather than obvious hand washing or physically checking. This is often referred to as “Pure O” but it is rather a misleading label as the compulsion is always there, though it may be internal (for example neutralising thoughts, avoidance, reassurance seeking, mental checking and rumination). The research shows that there are a number of thinking styles and themes that are key. Certainly an intolerance of uncertainty and over-inflated sense of responsibility are common.

I wanted to recommend a book for anyone else who reads your thread OP, which I think is very helpful and is written by a group of highly skilled clinicians who do not fall into the trap of simplification but have nevertheless written something very relatable:

www.ocduk.org/shop/break-free-from-ocd/

Sorry, not so much AMA as TDO (Therapist drones on)! BTW, on the subjects of therapists to treat OCD; CBT is really the best approach but make sure the therapist is BABCP accredited.