Can you tell me about your OCD

[Hangingover]

Hello MNers,

Can anyone who has experience of having/being close to someone with OCD describe what it's like for them and how it affects them and (hopefully!) how they've managed it?

I think I may have it but I'm reluctant to pursue treatment at the moment for various reasons - it'd be good to hear other people's experiences.

Thank you

I started with symptoms 23 years ago and have got it pretty much under control now but only in the last 6 months, ironic that my biggest fears of illness and things being contaminated has helped me get over it but I'm not complaining!! It hit a peak after both my kids were born and after I became a single parent. That was about 8 years of near constant panic attacks, frustration, uncontrollable fear, wasted time and money. And then the numbing with alcohol. My life was so small and empty. Relationships were almost impossible, my kid's lives were marred by it. I eventually just kept reasoning with the rational side of brain and tried to ignore the urges. I also completely changed my life. Cut right back on the drink, started a diet that is purely just healthy eating, started exercising, got a job I love. I am so very angry at myself for the years I lost. The nights I can't remember blacked out from booze. The days upon days of hangovers when I could have been enjoying myself and my kids. The debt I'm still paying off. The people I caused hurt to. If I could back again I would have had treatment as soon as I could. Indeed, my youngest dd started showing signs about 6 weeks ago and is already in treatment. The distress she is in breaks my heart.

Please get help, however hard it is to ask, it'll be a lot easier in the long run

Hi I imagine treatment is personalised to some degree and will work with your type of compulsion. I can only speak of my experience of my treatment. It was hard because I had to NOT do a compulsive routine and then face my anxieties and sit with the negative feelings. The more you do that, the more you come to realise (and believe) that what you think will happen actually doesn't. I don't think I will ever be 'over my OCD but I understand it a lot more and I know the techniques to help manage it.
Please ask for help. I was so scared to admit my thoughts and thought I was weird. But as soon as I told a professional they were like "its ok, we can help you fix that" there was no stigma at all. Any sort of stigma comes from society. It really grinds on me that ppl use the phrase "I'm so OCD".

Littleposh thanks for sharing. That all sounds quite familiar. Would you be comfortable sharing a bit more about what the actual thoughts/patterns were? I totally understand if you can't.

I've quit booze too btw. Was completely addicted, and to tranqs.

ChocolateCoffeeCake thanks for sharing. Can I ask what your compulsive routine/s is/was? Again no problem if not. So would you say treatment has made a marked difference in your mental health?

Treatment definitely helped me. I didn't know I had OCD until I was completely honest with the therapist about what was happening. Mine is more around actions eg. if I do/don't do something then something bad will happen (usually a relative becoming seriously unwell or dying) It's actually quite hard to even write this down, I didn't think it would be but just writing this paragraph took an amount of emotional effort.

I have contamination ocd.

I believe I've always had it even though I wasn't dx until my 30's - I was VERY secretive about my compulsions until then.

I understand the condition very well I'm told - causes (depends on what you agree with, there's evidence it's genetic, taught behaviour, bio-physiological, trauma related - physical and emotional) all of which apply to me so hard to know what is the definitive cause. Maybe all of them?), treatments, meds...

Which hasn't served me at all actually!

I've had several courses of cbt, other talking therapies, meditation, erp etc been on numerous meds...

None of which have really made a significant difference.

I am phobic of pretty much anything germ related but especially anything to do with any kind of "waste" be that "rubbish" or anything to do with toilets. But I also do a lot of counting and checking and have intrusive thoughts about anything to do with safety/security from locked doors to did I turn the cooker off.

I don't like being touched, especially by strangers as I don't trust their personal hygiene, almost everything gets washed/disinfected before using and there are so many "rules"
for this it affects my whole life - inc my sleep and my dreams.

I'm over 3 years housebound from the resulting agoraphobia. This is my 4th bout of agoraphobia each one longer than the last.

Been through numerous hcps too which is a whole other story!

But!

There are sufferers who if they get help as early as possible, fully engage with it and make a determined effort to recover and are fortunate not to face other obstacles who can and do recover to a point they can lead a normal life.

Ocd is not considered "curable" but "treatable" mainly because it's considered most likely to be genetic/bio-physiological insofar as our brains have developed differently to others.

I haven't given up, I'm under a new psychologist and awaiting a meds referral and possibly a referral for emdr (early days on whether this is considered effective, so hard to get referrals)

But I fear I will never be well enough to work full time or have an otherwise "normal" life.

Honesty with therapists is really helpful and important, but understandably difficult to do.

I developed my OCD when I was around 11 (I'm 34 now). I remember watching my dad's car leave my mother's house and I'd sit at the window watching until I was 'satisfied' his car had driven back towards his over the hill. Sometimes I'd be waiting hours. Rationally, I knew he had driven over the hill, but I would wait until a car similar to his satisfied me it was his. I also flicked light switches and touched things until I could repress the urge to do so. My mother called me a 'fuc*ing wierdo'. I also lined objects next to me in a perfect line and could only sleep when they were in the same order and in the type of line I was happy with. As I got older, I tried to hide my urges so started to do things within my own head such as repetitively counting tiles, sucking air in, if I brushed one ankle with my foot I'd have to brush the other ankle in exactly the same place. I'm a lot better now but it certainly hasn't went away - it's just more subtle. I referred myself to the GP when I was 15. In those days, mental health was fairly taboo. The mental health nurse said I was a puzzle and the psychologist repeatedly asked me what 'normal' was. I was placed on prozac at only 15, but came off it due to side effects. My care stopped when I was 18 and had to move to adult services. I've controlled it on my own since then. I now work with autistic children as well as those with very challenging behaviour. I'm convinced I'm on the ASD/Aspergers spectrum.

i had a terrible childhood and developed OCD as a means of controlling my environment. lots of counting, lots of checking the syllables in everything i heard or said (to get them to end on a 5 or a 10), obsessive skin picking to the point that i needed medical treatment for it.

as an adult, it really varies. i’m currently in a skin picking phase, and i make a LOT of lists in my head all the time which is very, very irritating. i honestly lost time the other day thinking of everyone i knew named Barbara. the intrusive thoughts are pretty calm otherwise, but i have found myself saying them out loud occasionally.

before i moved to my current home, i was permanently cleaning. it was a big house and i was very unhappy so i spent my time cleaning as a diversionary tactic. i once spent 5 days cleaning the cooker. now i live on my own i’m a lazy fucker. i mean, i hoover every day but i can’t remember the last time i did the dusting and that’s unusual for me.

other current irritations are my bedding and pillows. it takes me a long time to get my bed ‘ready’ with everything in the right place. it takes me a long time to fall asleep as i’m constantly adjusting a pillow or the duvet feels wrong.

christ, i sound like a lunatic. i also have BPD, depression, anxiety and complex PTSD. i take 19 different medications. my head never shuts up.

and that’s my OCD. i’m also a recovering alcoholic, 6.5 years sober. i drank to try and relax, but i was born to alcoholic parents and raised in an alcoholic home so that was always pretty much doomed to fail!

just to add - the intrusive thoughts can be upsetting and relentless at times. i worry that people i love are in danger or have been hurt or killed. i tell myself constantly that i am pointless, worthless. i lose hours and hours just thinking about all the bad things that have happened to me. i’m cursed with a photographic memory. i remember everything bad thing that has happened to me from the age of about 2. i remember obsessive details of ordinary days from my childhood and relive them.

i think this is technically known as Maladaptive Daydreaming. i’m waiting for my GP to refer me to a psychiatrist for a medication review and i need to talk about this as well. it’s like my brain is my worst enemy and it’s currently driving me mad. stupid brain.

I have intrusive thoughts (harm to others) and was diagnosed when I was 18. By that point I’d been living with the thoughts and compulsions (counting, checking, reassurance) for about 5 years. I thought I was going mad/was evil.

Diagnosed by a psychiatrist (the relief was amazing) and admitted voluntarily to an adolescent psych unit for 6 months. I did CBT and other therapeutic interventions plus meds and got stable, went to Uni, then relapsed and spent a month as an inpatient again.
I then had amazing CBT as an out patient which changed things massively. I’ve been able to manage my OCD well for 20 ish years, pursued a good career, got married, had a bit of a blip when pregnant with both children.

Am now in a bad patch linked to Covid stress I think, back on meds and awaiting CBT again. It’s rough but not as rough as before.

Okay. Thank you again for sharing so much because I know how difficult it is. I'm a bit shocked how familiar this is sounding.

I think my main reasons for thinking I may have it are;

• I get intrusive thoughts that I obsess over. Mainly about people I love dying on me getting sick. Like someone up thread, the key component of my anxiety comes from this strange idea that by thinking about or voicing the thing I fear I will somehow cause it to happen and it will be "my fault". This simple stupid notion has caused me an untold amount of psychology pain over the course of my life.

• I have had trichotillomania since I was very small

• I have to constantly reassure myself sometimes to really illogical degrees in order to tolerate the thought of anything bad happening e.g X won't happen because it's a Thursday

I dont really have any physically compulsive rituals though... except having to say aloud, "the stove is off" and "the door is locked" before I go out (otherwise I won't "remember" that it is and will panic about it later). I don't have any particular ideas about contamination apart from an obsessive fear of being positioned with bleach as a child. It more like the rituals are internal which is why it's taken me so long to think this might be the issue.

I think it stems from childhood trauma and my becoming fixated on the idea my family would "find out" about it...when I was about 14 I had confided the trauma in a friend who I later fell out with and I become OBSESSED with the idea she would somehow find a way to tell my Mum what I'd told her. I mean it got quite bad...to the point where I'd go into a mild panic whenever the landline rang because I was sure it was someone ringing to tell my Mum what had happened (the huge irony to all this was, according to a very deeply repressed memory, Im sure she already knew but that's a whole other thread! ). I'd lay awake at night as a 16/17 y.o obsessive over the awful thinks that could happen and weeping and weeping.

There's a whole bunch of other stuff too, especially revolving around cancer as DF and DM and numerous other people have had it/died from it. Does any of this sound familiar to you guys???

Am
So pleased I found this thread as my 13 yr old son has a Gp appointment on Friday to discuss his emerging OCD. So much resonates.... he hates being touched, has to wash his bedding repeatedly, never feels clean, he has started washing his arms as well as hands before bed and his hands are always clenched in tension. There is more of the same.

I knew I had something as a kid - I too had intrusive thoughts and skin picking. I also went through a stage of having to do everything with my left hand that I did with my right and vice versa.

There must be a genetic element as my cousin has suffered badly from OCD.

Does anyone have any advice about what to say or ask for at my sons first GP appointment?

@Hangingover

that all sounds familiar, yes. about a year ago i disclosed something to my GP that we were taught as children to never, ever tell anyone about. lots of terrible things began happening and i am still convinced it’s because i told.

i spent my childhood in fear of one ridiculous thing or another. it’s carried on into adulthood, probably because i never sought help for my OCD because i felt so embarrassed by it and of course it had been drummed into me that i was just a strange child who nobody would be interested in. that’s also the reasons i’ve never sought help for an eating disorder i’ve had for 20 years.

reading this back there’s a lot of me, me, me. i’m sorry for that. it’s just that when i start writing it down more stuff joins up and i really did have a terrifying childhood. all neat and tidy behind middle-class doors, but terrifying nonetheless.

When I was a teenager I had compulsions I had to do otherwise something awful would happen. One was if there was any piece of writing nearby I would have to read every single word on it or someone would die. I remember forcing myself to read every single word on my Mum's magazine including the numbers of the barcode. Then that changed and I had to "touch wood" if I got a thought that someone would die to prevent it happening, I would walk along with my foot brushing against the wooden skirting board until I was close enough to touch, for example, a wooden door and then I would go to sleep gripping my wooden bed frame. However I say it was mild as it didn't happen that often and didn't really affect my day-to-day life as it mainly happened in the evenings, especially if my parents were out in the car. I managed to stop it myself by just realising that my actions can't control the world/the future and so I slowly stopped doing them.

However I still definitely have traits of OCD-like thinking and behaviours. I am really focussed on contamination and cleanliness. My mind is a constant review of whether things are "clean" or "contaminated". I really sympathise with @lemondust and her son. Like him, I also notice I walk around with my hands clenched with tension as I am on such high-alert to what I can and can't touch/do and if I need to wash my hands. I have to wash my hands all the time. COVID-19 has definitely made this all worse. I get focussed on specific fears, at the moment my fear is getting an eye infection and so putting my contact lenses in is stressful, if my hand brushes the sink (for example) whilst putting them in I have to throw the lense away, rewash my hands and start again. If when doing laundry I drop something on the kitchen floor whilst transferring it from washing machine to tumble dryer I have to rewash it.

Funnily enough when I am out with others I am fine and all of the contamination fears disappear. Before COVID I could eat in a restaurant without washing my hands beforehand, whereas at home if I touch so much as a door handle I wash my hands.

when i lived with my partner and his late-teen son stayed over as-and-when my anxiety was sky-high as i never knew when his son was coming or who was in the house.

i had the en suite as ‘my’ bathroom and nobody else was to use it. it used to literally take me an hour to get ready for bed as i had to do everything in a certain order or i’d have to start over. the worst part was that the tap would make a very faint sound if there was air in the pipes so i would spend ages turning it on and off trying to run the air through so it was quiet. but then i’d have the stress that i had to wash my hands and hope that the tap wouldn’t start making a noise again. this cycle could go on so long that my ex would have to come and talk me down and get me into bed.

this hyper vigilance comes from growing up in a house full of tension and the fear of my parents starting up a drunken argument which could go on all night. i now live near a railway line, i have neighbours both sides and above me and we have a lot of wildlife but because this is my space and nobody else’s i feel in control and find the noises comforting.

my sleep is shot though and i wake frequently in the night and pace about, worrying.

my OCD aligned with my borderline personality disorder and anxiety disorder means that everything presents differently and my issues change. i went through a phase of burning myself with cigarettes but i don’t smoke any more so that has stopped. i hurt myself in other little ways that nobody notices and it’s all to keep the bad stuff at bay.

to summarise: i hate my brain.

@lemondust maybe it would help your son to make a list of things that he’d like to talk to the GP about. it can help take the emotion out of his behaviours and help him explain?

i know my experiences aren’t the most helpful to narrate. your son clearly has a mother who loves him and wants to help and understand and that will help him hugely.

OCD can obviously present as totally irrational and that’s the most frustrating part - i know my thoughts and behaviours aren’t logical but i can’t not act on them. it’s like when you need to stretch and that feeling won’t let up until you do.

i really hope his appointment is helpful.

Reading other people’s experiences helps me to not feel so alone with this.

I have a diagnosis of BDD which shares similar pathology to OCD. Plus I have depression and anxiety. I found CBT very helpful and also using a diary and writing down feelings and thoughts. The intrusive thoughts and feelings are anxiety-producing and I go into panic attack mode if this becomes overwhelming. It can be triggered by situations and things I read or hear. My mother is old now and requires care and it’s a challenge for me to care for a woman who never really cared for me.

My childhood was lonely. I had an elder brother on the autism spectrum who received all the attention. Then my mother sent my brother and I away to boarding school aged 10 and kept my sister at home. I’ve struggled with mental health my whole life, but I am learning ways of managing my condition.

I have contamination OCD (a very specific contamination!) and existential OCD. I have a lot of ‘magical’ thinking, worry about things that simply couldn’t logically happen which resulted in me sometimes suffering from agoraphobia. I have very few rituals, though I have an odd way of counting things in my head in 3s. I look quite normal in real life, I have had demanding jobs and been financially very successful in life. My OCD manifested at the age of 8ish (I’m 51 now). I had a chaotic and violent childhood and am tackling CPTSD too. I have tried various therapies and I implore you to find a therapist that GENUINELY understands OCD. It took decades to learn that reassurance is rocket fuel to OCD and even though I knew that I somehow kidded myself that I was researching/learning. I was constantly seeking it. There is no reassurance. You have to face it head on, and be lion heart brave. OCD Recovery (Robert Bray) is the best resource I have ever found and I have spent 10s of thousands over the years. Good luck to you, it’s doable and relatively simple (you know the fear is broadly speaking groundless) but it is not easy. Radical acceptance and compassion are the qualities you need to nurture, in spades! Good luck 💚

@AuntMasha

Reading other people’s experiences helps me to not feel so alone with this.

I have a diagnosis of BDD which shares similar pathology to OCD. Plus I have depression and anxiety. I found CBT very helpful and also using a diary and writing down feelings and thoughts. The intrusive thoughts and feelings are anxiety-producing and I go into panic attack mode if this becomes overwhelming. It can be triggered by situations and things I read or hear. My mother is old now and requires care and it’s a challenge for me to care for a woman who never really cared for me.

My childhood was lonely. I had an elder brother on the autism spectrum who received all the attention. Then my mother sent my brother and I away to boarding school aged 10 and kept my sister at home. I’ve struggled with mental health my whole life, but I am learning ways of managing my condition.

This is tough, I’m sending you much strength 💚 Is there any way someone else could care for your mother?

Thanks to those who replied about my son. I hope it is helping you too OP. My son is desperate to make it go away and is very open about the issues he has with me and I support him and help as much as I can, so I think that's a really good start from the sound of things. It must be so distressing trying to keep it all a secret.

I was just consumed with a fear that I would die or my children would. I felt it was more likely to happen to me as I deserved it but I maybe I would lose them as 'punishment'. I'd convince myself into symptoms and just sit sobbing, waiting for it to happen. It was so real to me at the time

I've had OCD since I was a child and I have adapted my life so much to accommodate it, that most of the time I forget I have it.

It is generally food and contamination related. I can't eat certain foods and can't eat cold food that someone else has prepared (hot food takes an enormous amount of willpower and can also be challenging). Unfortunately this sort of OCD is unacceptable to many on Mumsnet, and I would be labelled as an attention seeking, fussy eater.

I also count in 3s and regularly have intrusive thoughts. At times of stress I set little challenges for myself to complete. If I don't manage it then the bad thing I fear will definitely happen. If I do manage it, then the bad thing might still happen, but I will know that I have done everything in my power to stop it. OCD is not a logical illness!

Hi OP, I have contamination OCD and emetophobia. I have struggled since my teens but things spiralled in the last 5 years. I have spent two periods as an inpatient in a psych ward- one for 6 months and one for 4 over the last 18 months. The stays really helped me as it was focused on exposure response therapy, which was heartbreakingly hard at the time but I am reaping the benefits.

Right at the start of the program they tell you to adjust your thinking- there's no cure, just ways to make it manageable.

I have very few compulsions other than obsessively reassurance seeking and checking and counting. My DW had to learn how to NOT give me reassurance, and finds this so hard to do when I'm distressed, but @TOFO1965 is right- reassurance literally feeds OCD.

Try and get some help OP, it's worth it.

Don’t want to derail the thread but just wanted to say to TOFO1965, thank you for your kind comment. x

oh. i’d forgotten about the obsessive reassurance seeking. i don’t have anyone to check with at the moment so it’s faded back. definitely a regular feature tho.