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I actually do have OCD AMA

78 replies

genuineOCDsurvivor · 01/07/2018 16:24

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.

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genuineOCDsurvivor · 01/07/2018 16:42

Should have said I have name changed for this as it would be very identifying and outing IRL and don't want my other posts found Wink

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dementedma · 01/07/2018 16:46

How do you manage the anxiety attacks and the fear that not counting something a particular number of times will cause a death or some such?
Do you manage to sleep and if so, how?

genuineOCDsurvivor · 01/07/2018 17:01

Hey @dementedma I don't actually have any rituals that are counting ones

I have rituals which come out of a compelling fear to neutralise contamination which could in turn harm an unborn baby if I was pregnant (I'm not, so not logical but it still exists just in case I fall pregnant)

I've now done some exposure response prevention therapy which has helped a lot for me to stay with the anxiety more before I carry out a compulsive behaviour (ritual)

Prior I did not cope at all, my whole life was centred around preventing potential contamination. It affected my relationships, I wasn't able to work, I couldn't function at all until I did something - I had many rituals depending on where the threat of contamination came from.

Now I sleep most nights. Before I couldn't go to sleep before showering, changing bedding from fresh out of the wash, turning pillow inside out in case it had touched anything between dryer and bed. I couldn't sleep very well as I was worried that my child or husband might contaminate me accidentally in the night (husband had to sleep elsewhere, now we are divorcing)

I'd highly recommend ERP therapy to other people with OCD as it's been lifechanging for me. Not easy but worth every session.

I also sometimes use CBD oil to help with anxiety

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LoveMyJob1 · 01/07/2018 17:07

As someone who had successful CBT, what would you like therapists who treat OCD to know/do? What would have made your therapy better, if anything, and what was good about it?

genuineOCDsurvivor · 01/07/2018 17:13

Hey @LoveMyJob1 it made a massive difference to me one session when my therapist asked if I thought he felt I was stupid. My answer was yes and he replied that he didn't and could see my logic but I had so many possibilities that all had to occur in a perfect storm for what I was fearing to actually happen.

My logic though detailed and obsessive actually being recognised seemed to help me trust him.

I also noticed things about him that I wondered if were OCD related. He empathised greatly. I'd have loved to have known if that was why he was so good at it but I never asked and he never told me.

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LoveMyJob1 · 01/07/2018 17:22

Thank you for your answer! It’s really good to know you were reassured by the therapist acknowledging the logic to your concerns, and helping you to see that while your fears were possible, they were incredibly unlikely. That’s really useful thanks.

So much of contamination OCD seems to be about seeking uncertainty: wanting to know 100% the feared situation won’t happen so doing everything possible to make sure it won’t, the problem being there is no certainty in life and it IS possible for that one off freak scenario to occur (for example you step on a recently used needle contaminated with a BBV). I think it helps to support people to see that while it’s possible, it’s unlikely, rather than focus on trying to provide certainty it won’t happen, as seeking that certainty is a massive part of the problem.

I almost feel it can take some of the wind out of OCD’s sails to say ‘actually you’re right, that is possible. Let’s see how likely it is’ as it reassures the patient they’ve been understood, they’re not crazy for thinking it could happen, and doesn’t feed the seeking of certainty one way or another.

MishMashMosher · 01/07/2018 17:29

I have ocd too op. Do you have kids? Do you worry you will pass any of your ocd rituals ect on to them? This really worries me. I try to hide it from them but things like having to take them to public toilets really stress me out and I physically can't hide it all from them.

genuineOCDsurvivor · 01/07/2018 17:29

@LoveMyJob1 are you a therapist? Grin

I completely agree. IRL friends and family just got frustrated because they'd say it won't happen why worry.

The difference being how I assess risk to them... any risk is about a 90% chance to me. To them it might be about a 5% chance or less.

My therapist did take time to allow me to reel off statistics I had obsessively googled and researched. They didn't start from a place where I was definitely talking bollocks.

Through the sessions I think my risk assessment did decrease a fair amount but it's still much higher than your average non OCD person. I'm getting better at staying with the anxiety and noticing that it hasn't happened on the numerous occasions daily it could have in the year since I have completed therapy.

I don't even go for blood tests privately just to check anymore so my risk assessing must have dropped significantly

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Johnnyfinland · 01/07/2018 17:31

I’ve also got OCD. Do you ever get disturbing intrusive thoughts with yours?

genuineOCDsurvivor · 01/07/2018 17:35

Hey @MishMashMosher I do worry yes. Constantly. I have passed on some.

He tells people who come through the door to wash their hands immediately

He washes his for as long as I do with proper hand washing technique (just not as often as me)

He knows not to go anywhere near my face. This makes me particularly sad as I want to spontaneously hug/kiss him and he me and we can't do that yet. I do cuddle him a lot and I've never told him why I don't like it, just that I don't.

But he isn't doing these out of fear, he's doing it because I've trained him to do it as it's easier for me to cope.

I do notice he's quite rigid in the way things should be done. I worry constantly he may have the battle ahead but he also might just like things a certain way. Too young to tell.

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yawning801 · 01/07/2018 17:37

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!

LoveMyJob1 · 01/07/2018 17:38

I am! It’s good to have the opportunity to ask a patient peer to peer, who doesn’t feel the need to sugar coat things, their thoughts on how we can provide a better service.

genuineOCDsurvivor · 01/07/2018 17:41

Hey @Johnnyfinland yes. All the time.

For me I almost feel it physically when they drop in... not sure if anyone else relates to that? It's like a sudden jolt of "what if?" obsession.

I then end up playing out scenarios in my head about what I will have to do to cope for a baby I've harmed, maybe I'm not meant to be a mum if I harmed a baby even accidentally, maybe I will be punished for imagining that severely disabled baby that I made become disabled by not taking good enough care to prevent and it will all come true, maybe I would end up doing a mercy killing, because I thought that does it mean I could actually murder someone? Do I have it in me? Can anyone tell what I'm thinking?

These are horrible thoughts. I don't mean to offend or upset anyone, this is OCD. This isn't my thoughts I choose.

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MishMashMosher · 01/07/2018 17:44

Thanks for answering so honestly. I've passed a few things on to my kids too which I hate. But like you said they do it just because it's routine not because of fear or anxiety.

I get the intrusive thoughts too it's absolutely horrible thinking about what you could do even though you know you'd never do it.

genuineOCDsurvivor · 01/07/2018 17:46

@yawning801 not offensive. They became irrational when I had got to a point with them that my therapist and I worked out was incredibly incredibly hard for it to ever happen

Like when I split with my husband and wasn't sexually active, but still had to carry everything out just in case I ever had a ONS and fell pregnant. I could barely leave my home so that wasn't going to happen.

When rituals had gone as far as controlling the way I ate a sandwich being linked back to preventing harm to an unborn baby. I still had logic to it but very detailed obsessive logic that I could never ever trace back to the routine of eating a sandwich even if it did ever happen.

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genuineOCDsurvivor · 01/07/2018 17:52

@MishMashMosher they are horrible and you do know you couldn't somewhere in you, but your so concerned with making sure you don't just in case.

I have called the NSPCC and social services on myself and spoken to the school several times. Just to make sure that I won't do something. Thankfully I'm now known for my OCD and it's well understood not to be a safeguarding issue when I worry about stuff like this.

But try explaining to a new partner that you don't actually want to ever kill a baby just because you worried you might. It's scary for them.

It helped when a lady on OCD uk helpline explained to me that because of all the concerns I have I am the least likely person statistically to ever do such a thing as I police myself constantly to make sure I couldn't even accidentally do any harm.

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genuineOCDsurvivor · 01/07/2018 17:54

@MishMashMosher my therapist also framed it that I am especially compassionate to worry so much. That helps with the guilt the intrusive thoughts bring.

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genuineOCDsurvivor · 01/07/2018 18:08

@LoveMyJob1 absolutely! Thanks for asking

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DamsonGin · 01/07/2018 18:20

I'm glad you started this thread, the other wasn't nice but this is useful to read as I have a couple of friends with OCD (diagnosed) so it might be helpful at some point.

Slightly random question but does it ever help when famous people are mentioned as having OCD? Justin Timberlake springs to mind. I'm in two minds myself, DS1 has ADHD and sometimes it helps, sometimes it doesn't.

JellySlice · 01/07/2018 18:24

This very interesting. Thank you for your openness. Your thinking patterns, the logic, the rationalising towards an ever-worsening scenario, are very familiar to me. They remind me of when I was mired in depression. I never had OCD, but I was paralysed by such thoughts.

It was (and, to a certain extent, still is) as though I didn't know what to fear, so I feared improbable things. Now I recognise those thinking patterns as a warning signal of a downswing.

genuineOCDsurvivor · 01/07/2018 18:31

Thanks @DamsonGin yes the other thread was particularly upsetting to me as OCD is far from helpful quirks, it is hell on earth. Obsessive hell. I get so irritated by the idea I might just like something a certain way and that might be my OCD. No I still have likes and dislikes just like anyone else but I also have an illness that never stops affecting me that makes me scared constantly and imagine graphic detail of horrific events.

I don't actually know who does or doesn't have OCD celeb wise... so I guess for me it makes no odds or I would have obsessively researched and be able to reel off who does and anything they've shared about it. (I think I also have an obsessive streak in my personality as well as OCD) I do always feel glad when someone raises awareness though as it's hard and long to counteract the stereotypes out there with misinformation so I would feel appreciative of a celeb if I learned they'd spoken out about their OCD by chance.

I think it might help me more if I could look at them and say because they can do that while having this... I can do it too. But I don't really currently have any major aspirations beyond helping others, healing myself and having another pregnancy one day.

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DamsonGin · 01/07/2018 18:34

Well if raising awareness is good, you're doing an ace job of it yourself Star

Inkornoink · 01/07/2018 18:38

Grin I thought about starting this thread. I’m not going to derail, but solidarity OP virtual fist-bump.

genuineOCDsurvivor · 01/07/2018 18:38

Hi @JellySlice thank you. I'm so pleased for you you've identified your warning signs. Forewarned is forearmed and all that.

I'm not going to suggest you have it, but take a look at a sky news (think it was sky) segment they did on Pure O. You may relate, you may not.

I was initially diagnosed with depression and anxiety, then health anxiety. My diagnosis was changed when it was impossible not to call it OCD finally. Symptoms obviously overlap in many conditions though

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genuineOCDsurvivor · 01/07/2018 18:40

Thank you @DamsonGin

Ah@Inkornoink join in with me if you like Smile fist bump 👊 solidarity back. I don't mind if you want to answer too, we'll be similar in some and vastly different in some things. It's good people understand that.

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