I actually do have OCD AMA

[genuineOCDsurvivor]

Annoyed with the earlier thread I'm starting one of my own. I will answer my own experiences and own views. I don't speak for all people with OCD. I hope it raises awareness but none of us are identical.

@Inkornoink tag fail ^^

I’ve also got OCD, it started when I was a little kid and I would have to smooth every crease in my bed sheets a certain amount of times and touch all four corners of the picture frames in the hallway with even pressure from all my fingers on both hands. If I didn’t then I thought that my parents would die in a car crash. Since then it’s manifested itself in many different ways over the years (now mid 30’s) and got to the point where I could no longer work for a while. OCD is agonizing. I hate it when people are all “Oh I’m so OCD!” to try and appear quirky. Sorry to hijack, just wanted to share xx

thank you. my DD1 (27) has it. she still lives with us and I fear she will never be independent. She rarely sleeps during the night so sleeps through exhaustion during the day. she has had all sorts of therapy and takes a haeavy dose of ADs. She can talk about it openly now and has all sorts of coping strategies but most of her teen and young adult years were consumed by "voices" telling her that if she made the wrong decision then someone in the family would die. but if she tapped somethig a certain number of times then she could mitigate the risk. and so the rituals began....

At what point did you realise that your rituals were irrational? Sorry if that sounds offensive, I don't know how else to put it!

I don’t find this at all offensive, but it is interesting. For me, it was when I would get ready for work 2 hours early so I had enough time to go in and out the house and up and down the path and up and down the road enough times until I was allowed to leave.

My fear is that my house will burn down when I’m out and my pets will be burnt to death, but I did realise when I would pace up and down the garden path that this isn’t a ‘normal’ reaction. And rationally, I just couldn’t stop myself going back for one last check of all the things that I’ve just checked. I’m on a fine line between anxiety and OCD, but the repetitive behaviors and intrusive thoughts make me relate more to OCD.

Hey @genuine thanks for replying. I know exactly what you mean about that physical jolt of terror when the intrusive thoughts arrive. I too play out the scenarios in my head over and over, almost to ‘test’ whether I think I want to do the horrid things in my thoughts.

I have no physical manifestations of OCD - I don’t clean, count, arrange things, check locks etc - it does annoy me people think it’s all about that when it has a much darker side, but I feel I can’t reveal my intrusive thoughts to many people as there’s a stigma around them because of the mainstream idea of what OCD is

Hi @Johnnyfinland have you been diagnosed with pure O?

I found for myself that I did have rituals and things I did in real life but didn't initially recognise them as compulsive rituals to begin with because they weren't the stereotypical clean, count etc as you say, obviously it became quite apparent after a time

@dementedma it's incredibly hard to live with and heartbreaking to see someone do to themselves.

She may yet. I live a relatively normal life now. I still have it but I should be able to return to working soon, I study, I have kept my child, I am getting there. Don't give up hope, I know how hopeless it can seem.

I hope she will find the key to loosening its grip on her x

@DamnItPatrice thank you for sharing. It's peculiar how it can morph isn't it?!

Totally with you on the hate of people trying to pass off quirks as OCD as if it's something fashionable or pleasant to live with

Would it not look tidier if it was called C.O.D rather than O.C.D?
Put the vowel in the middle, where it belongs.

No @BartholinsSister

There is an obsession (anxiety driven obsession and over inflated sense of responsibility) which leads to a compulsive behaviour aka ritual

It's in the right order for what it is. O...C...D

But lots of us don't require any particular order for anything.

@Inkornoink thanks for answering a q with your experience too. Very interesting x

I didn't see the previous thread- what was it about?

I have very severe OCD, for which I spent three months in hospital in an anxiety disorders unit at Bethlem Royal Hospital (formerly 'Bedlam'). I really wish people understood what it's really like- how debilitating and life altering it is and the pervasive effects that it has on all areas of life.

Why do people feel that it's acceptable to trivialize a condition that destroys lives?

@OCD2 it was titled I have OCD ask me specific questions that are neat and tidy and in the correct order ... I think. Got zapped and a pretty good deletion message from @MNHQ about not having disablist talk on the boards

I've spent time there too. Not the same unit. Did you have a positive experience? I miss the pottery!

When did it start and why specifically about pregnancy (do you think)? Did you have an experience that triggered it?

Yes @genuine I had CAMHS therapy as a teenager and the counsellor said I had a form of OCD that was purely mental and the hardest to treat (pure O in other words)

@OCD2 because they are dicks.

The same way racist jokes used to be "funny"

Mocking MH is still fair game for dicks. I can laugh at myself sometimes but unless I'm laughing too, it's mocking not laughing with me

@kaytee87 I suspect I've had it much longer than in pregnancy but pregnancy triggered this specific obsession because I did have an experience with my son where I was convinced I had harmed him in pregnancy.

I haven't. He's absolutely perfect. (Not that a disabled child wouldn't also be! It's my guilt attatched to it)

I still grieve for the baby I thought I was having though. It's strange as it was my worst nightmare to have caused the harm... and I didn't... yet I still miss/long for the baby who I was absolutely convinced I had harmed. Who I would have spent my life making it up to... hopefully rather than my nightmare intrusive thoughts about mercy killings. I can't prove to myself that I never would have done that because it never happened.

I am fully bonded to and adore the son I got. Just still feels like someone very real vanished.

I say I think I had it before because I would religiously obsessively pray. Days on end. No sleep. However I did this at a time I was in a very extreme form of Christianity and it wasn't abnormal in that context... it was seen as a good thing.

It sounds almost like you have a bit of a guilt complex and feel the need to punish yourself. Ignore my armchair diagnosis if it's not useful

Very interesting thread and I actually recognise your thought process in myself (although not lately). I used to be a bit obsessive about checking the front door was locked and also making lists, planning my day down to the hour. Thoughts of something horrible happening to a family member popping into my head then obsessing over it.
I'm not sure why it doesn't really happen anymore, I must be in a better place and less anxious all round.

@kaytee87 yes guilt plays a massive part in OCD. You have an overinflated sense of responsibility where things you can't control.... well in your head you can, and must. And if you fail, you will be guilty.

Not only that though but the intrusive thoughts can be horrific. You feel guilty for having them. I've shared as much as I feel able to without potentially triggering and really upsetting or frightening someone on this thread. You wonder why it happens to you, why do you get those thoughts... obsessively and other people don't or if they do are able not to take them seriously.

There are people with OCD who obsess that it means they're a pedophile. They're not... they have OCD. They'd never ever harm a child. But having intrusive thoughts like that... you can see why they'd feel guilty. For me mine is more violent, but the logic is actually it's not about being violent it's about protecting... hence the mercy killing aspect.

I am the least likely person to ever do such a thing given I am policing myself constantly, terrified by the thoughts. It is the thing I least in the world desire to do to someone that plagues me.

I find OCD isn't static too, the less anxious I am the less severely affected by it I am. Of course I'm anxious because of it too... but the safer and happier I feel I do think on a day to day basis it's less if I'm feeling secure and content

I've recovered a lot from where I have been but still up/down days

@Johnnyfinland yes it's very hard I imagine without the obvious rituals for it to be treated or recognised.

I suspect there's a lot with it who can't admit to it out of fear with how graphic/upsetting the intrusive thoughts can be

I'm glad CAMHS recognised it for you. I think there was a battle to even get it recognised at one point

Thank you for this thread OP. I have OCD myself and it's amazing how much less alone I can feel just by reading about someone else's experiences.

Thank you for this thread OP. I'm glad you are getting better.

My dd (11) has just been diagnosed with OCD. She has a few physical compulsions around touching and symmetry but mostly cognitive compulsions like having to recite the alphabet to herself. She is in treatment. It isn't bad so far but my understanding is that it grows if left untreated.

While figuring out what was going on with dd, my husband realised that he probably has it. His physical elements don't interfere with life too much (to do with unlucky numbers, rules about steps and walking etc) as he has basically normalised them. But he is in the grip of (I would say) severe cognitive OCD/anxiety which affects his functioning. He thinks he's anxious, I think it is another OCD manifesation. His thought patterns are obsessive around harm to his family, the nature of reality, and other things. He has now been referred to a psychiatrist for the right medication and treatment (privately through work insurance).

I would say this revelation about what OCD really is explains a lot about why my life as mother and partner to two lovely, bright empathetic people (who seem to be functioning well) has been so draining. The levels of reassurance and decision-making they demand from me are clinically not normal. But I feel more hopeful now because the treatment will involve reducing the reassurance I give and empowering them. So although I expect it to be hard learning to change our behaviours, I also feel hope.

genuineOCDsurvivor
Thank you for sharing your thoughts. I've always wanted to ask some questions to others with OCD.

My DSis has OCD. She developed it in adulthood. I'm not sure what triggered it but she was going through a stressful time at work so maybe it was that.

Anyway, we lived at home with my parents and I found it extremely difficult living with her. Her OCD is around dirt/ germs. This touched this which touched that so it's all contaminated now etc. So lots of handwashing, washing objects,, clothes etc. She also has fears around matchsticks.

I found living with her affected my mental health severely. She would scream and shout and tell me to wash my feet if she felt my jeans were too long and hence touched a matchstick. She would constantly snap at me to wash my hands. She would walk around me making it really obvious she didn't want to accidentally brush past me and she made me feel dirty.

If I ever, said look no I haven't touched anything / not stood on matchsticks etc and I'm not going to wash my hands / feet all hell would break loose.

She was even worse with our DM. I eventually moved out and it wasn't till a long time after I felt I could be myself even in my own home as her behaviour was so controlling. I understand that complying with her rituals we were making things worse but living with her was so hard work, we would do anything to keep the peace.

Now she is still living with my parents and my DM has essentially become a slave to her and it breaks my heart as she herself has health issues. She cooks, cleans and does almost everything for her in the house. Eg DSis leaves her plate/ cup at the table for DM to clear up after her. DM says if she did it herself she would take ages washing her hands. Though she doesn't have any issues around dirty food dishes. She just takes longer washing her hands than the average person. ( If it was concerning germs she would then take a lot longer). She leaves her dirty clothes on the floor for DM to pick up and wash. DM can't go into the bathroom at the time she comes home from work. She also has to have the food ready for her when she comes home.

My mum knows exactly what not say or do in front of her and her whole life, her behaviours, what she can and can't do revolves around my DSis. As long as this happens, DSis is great to live with.

DM has been doing this for so long now that this is her norm. She thinks this is ok but I don't think it is.

Anyway, we have other siblings and she would NEVER tell them to wash their hands etc . My DM and I are quite "soft" and I have always thought she gets away with it with us. She wouldn't dare to speak like she does with her friends- they don't even know she has OCD.

I know it can be difficult to live with people with OCD and I have been one of the most understanding and supportive to her and yet am treated one of the worst.

What I am having trouble understanding and it doesn't fit well with me, is that why is she so controlled around others (Inc our other siblings) and really horrible with us. To me, she should be equally as controlled with us. I feel like she can do it but is choosing not to. Is it she's being nasty to us, and it's not actually the OCD. She generally is a difficult person to live even before the OCD. Is it her personality that makes her "pick on" us or is it the OCD? Does that make sense?

Do you "behave" around others and then completely controlling with people you can push around? Sorry- that sounds horrible and I don't mean to sound mean.

Apologies- this has turned into a mammoth post!!

Do you think that ocd is on a spectrum?
I recognise the intrusive thoughts and often lose myself in a wormhole of my children dying in various circumstances, planning their funerals etc. I also worry excessively about leaving my straighteners /the oven on/the iron on etc to the extent that I’ve had to come from parties, phoning my husband to check, phone people to go round to my house when we’re out, making up a little rhyme to remind me I’ve done these things.
I also had a complete block over sterilisation when first child was born and was v worried that certain things weren’t remaining sterile.
I wouldn’t say these things distressed or had a massive impact on my life-on the odd occasion I haven’t been able to check if something’s been left on I have worried until I got home but not to the point of being unable to continue what I’ve been doing.