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.

@spudlet7 thank you it means a lot that this thread has helped you feel less alone and helps me turn my own nightmare into something with a positive aspect

@andalittlebitofpixiedust sorry to hear about your DD and husband, definitely treatment should help. It might be useful for you to find a support group as I honestly understand living with it and not having it yourself is incredibly frustrating, it's not like you can close a door and get away from it - your life changes too and it can impact on your own mental health. You're living in a highly stressful situation yourself because of it. Reassurance is hard imo with OCD, on the one hand it actually makes things worse - validates that there is a real risk worth paying attention to. On the other hand it's quite cruel to leave a loved one alone in so much anxiety. Catch 22. I found my therapist acknowledging my fears helped rather than shutting them down like I was being rediculous. My therapy was to remain with the anxiety in a very structured baby steps controlled way and learn for myself that anxiety will naturally reduce the more I don't "medicate" it with my compulsions.

I think you sound very empathetic and patient and OCD sufferers need people like that with them. If you can, don't get angry with them... get angry at the OCD and fight the OCD but being very gentle with them. They already will feel guilty about it and hate it affects you. I haven't come across a person with OCD yet who doesn't feel very guilty for what their illness does to their family

OP, thank you. I am already learning that reassurance just feeds it and this will be a learning curve for us all. I guess I meant that it explains what has been the case up until now, that they would seem to need more reassurance than other people but it wouldn't really help. I would get stuck in these long bedtime conversations with my dd and think I was being a good mum by giving her space to talk about her feelings when it wasn't actually helping. She's doing great at engaging with the treatment so far. One of the things I find amazing is that she says she can tell the difference between (say) just wanting to brush her hair properly and feeling compelled to brush it 100 times.

Also, a question, she says her 'superstitions' change quite a lot? So she doesn't always feel compelled to say the alphabet backwards or brush her hair a certain way or whatever. Is this how it normally works?

Thank you for sharing this.

I had OCD (pure O), though I am pretty much recovered now. It took a LOT of therapy to get me there, and I still have vestiges of it but am much better at recognising when the obsessive thoughts start and stopping myself before I get trapped in a spiral of them. 13 years ago I wouldn't have been able to.

My obsessions were centred around suicide and killing my own children. It wasn't that I wanted to, I was just incredibly sure that I would accidentally kill myslef or them one day, and lived my life every day constantly planning how to not have that happen.

Practically that got to ridiculous levels like refusing to drive on motorways or over 40mph because I didn't trust my ability to control a fast car, crawling along the landing with my baby (because if I was stood upright I might fall and throw him over the banisters) and lying awake every night mentally planning how my family would cope without me after I died (because it was inevitable that I soon would so I had to ensure they would be OK) It was exhausting.

Like I say, I'm "cured" now. Ot at least I have it under control so much that it doesn't affect me on a day to day basis.

I am still anally retentive. I love lists and order and control and tidiness. And keeping things around me under relative control is one of the coping mechanisms I use to ensure I don't get ill again - being able to look around a sparkinglingly tidy house and know I'm on top of things does give me a sense of satisfacion and stops me feeling guilty about not succeeding at life.

Feeling guilty about not succeeding is definitely one of my triggers and one of the most important things my therapy taught me was to redefine my previous very narrow concept of what success is, so it's now far far harder for the guilt and doubt and lack of self worth to creep in and start me off.

But anal retentiveness and OCD are two very very different things, and like you I get incredibly annoyed when people conflate them. Anal retentiveness helps me to feel good. OCD nearly destroyed me.

Hi @gesu

That sounds really difficult. Answering as truthfully as I can... there are people who heighten my anxiety and I am worse around (which could look like I pick on them) hand on heart I don't mean to... for me these are specific people who have connections to traumatic memories and reading your post the little you shared it doesn't quite sound the same but you'll know better.

My mother I am probably the worst with, one because she's my mum and there's a huge part of me that wants and needs mothering gently and in the past I've felt her ways were incredibly heavy handed and frightening (I don't mean she's a bad person, I have a sibling without OCD) but I guess I take extreme control with her as I'm very very anxious and have felt suffocated and trapped to the point I've done some really nasty things to escape. I feel incredibly guilty about this and I feel quite sorry for her. I also feel very special when she tries so hard for me though and respects my limits. In some ways perhaps I'm taking control and taking what I need from her by any means possible.

Another would be partners - they're just closer to you emotionally and I find that scary yet crave it and need it too. But I've been through some trauma with one or two in my lifetime. I'm always scared they will turn very nasty on me. I think I self sabotage tbh with boyfriends as I want to know how far they will stay with me before they walk or get aggressive... I don't realise I'm doing it usually till they are telling me they will leave.

Maybe your sister is closer to you than other siblings? Maybe she's trying to gain something that was missing somewhere or triggered in childhood with your mum?

Or maybe she's using it as an excuse for a comfy life. I can't say. Maybe she's got used to it and it's too scary to change, maybe she's feeling incredibly guilty inside but too scared to leave what makes her feel safe with your mum?

I am 100 times better with certain friends and when push comes to shove and it's affecting my son I find mummy strength somewhere within to push through things that terrify me. One thing that terrifies me is him growing up being the kid with the "crazy mum" so I definitely adapt behaviour around other mums or simply avoid them altogether if I can't manage that. But when I am in private after having done this - I'm in pieces and compulsive behaviour will get a lot worse behind closed doors with me. It's not like I don't do it... it's like I manage to keep a lid on or do compulsions I style out to hide like excusing myself to the toilet several times and blaming a bad tummy I don't have (I lie tbh to cover up) or I refuse food offered and drink saying I'm unwell, or I cancel plans or make excuses to leave early for no good reason but come up with one. That sort of thing

I have found that I can also go to the other extreme where I am on a mission to sabotage myself and take risks though I wouldn't ever usually take - like an ex I would have unprotected sex with. He was actually an OCD therapist though (not mine) and I just blocked out and covered what I was doing as though I was fully recovered, I just pretended like he didn't have kids to myself and like he couldn't infect me and kidded myself that because of his job he would keep me safe. When that ended I went into a very dark place and into OCD overdrive. I did feel very safe with him though until it ended.

@Cauliflowershower I'm honestly not sure myself. Maybe...

I think anxiety is normal, and it's normal to worry till we can reassure ourselves. I think intrusive thoughts- key word being intrusive... they are like the guest you can't get rid of who keeps returning every time you thought they would go home. They exhaust you emotionally.

If I have a compulsion... I HAVE to do it. I will lie, manipulate, hide, ANYTHING... because I am making sure something awful can't happen. In therapy I remember a day I was to use a tissue from the tissue box... and it got even worse as there were no tissues and the therapist had to go get some from the toilet. I had to trust him but we sat there for a long time before I could use the tissue to dry my eyes. And I hated his guts. Genuinely hated him for some of that session. In my head I was planning how to do it so he thought I had but I hadn't... going over the risks if I close my eyes and fold it a certain way is there any way it can touch my body fluids (eyes, nose) going through how long left of the session if I conned him till I could wash my face, going through how I would just never have sex with my husband again so I couldn't harm a baby if I did catch anything... etc

But once the tissue did touch my face... it wasn't as awful as I expected and I did complete my session and made massive progress that week afterwards.

I'm coming back and will reply to all... just have my son home for a day and he requires some attention. He's just been 'doing the washing up' bless him

I still have to go rinse it all and put it in the dishwasher but at least I have managed to thank him rather than yell at him for it... progress!

@genuineOCDsurvivor I didn't see it mentioned upthread, so apologies if it was. Did you project your fears onto other pregnant mums?

So, you thought everything you did put your baby at harm, but when you saw other mums to be did you assume that they were harming their baby in some way?

genuineOCDsurvivor thank you for your reply. I know my DM or me definitely do not cause her more anxiety. If anything we change our behaviours for her yet she still was is very controlling. There have been times where I've been out with her with others and something has happened eg friend dropped her phone on the floor, picked it up and touched my sister on the arm when chatting etc. If that had been us, she would have instantly said don't touch me and walked a far distant away from us, constantly checking making sure she doesn't brush against us. She would then never touch my coat, handbag etc. And would continue treating my like I'm some sort of vermin. But with friend, she's fine. When she got home she threw her clothes in the wash and that was that. Friend would have been oblivious .

When I moved out, she still continued to control me when I visited and I gradually stopped visiting which has been a shame as it has affected my relationship with my parents.

I find that it is a very selfish illness. She doesn't see the impact of how her behaviour affects those around her. It's all about her thoughts and feelings. When we say it's difficult living with her - she says it's more harder for her. We don't know what it's like. We've never had a "I'm sorry I hurt you and treat you badly, I can't help it". It's all about how everything is harder for her so who cares if we find it difficult because it's harder for her.

She has made my DM cry a million times but she would always say it's DM's fault.

She isn't really close to me. She is more close to my other sister but she is nicer to her. She doesn't demand that she washes her hands etc to her. I think it's a case of she can get away with it with me and DM.

From my perspective it comes across as she picks and chooses who she "behaves" with. That is what I struggle the most with. It's affected my mental health and I will never forgive her for it. I find keeping contact to a minimum the best way for me.

She has become so dependent on my DM. I fear how she will cope living on her own if she died.

I see people like you who have children and relationships and wonder how you've managed to maintain relationships as she cannot because of the way she ends up treating partners. She has been single for a very very long time now but she won't admit her failed relationships is due to her behaviour and OCD.

How have you maintained your relationships?

gesu I am not OP but I wonder

1. if there are similarities with other neurological conditions in which 'safe' people/spaces see more challe going behaviour. Children with autism can often hold it together during school but are more rigid with more meltdowns at home.

2. if OCD may be comorbid with a personality disorder for your sister.

3. Accommodating her OCD will make it worse, and it may make it worse specifically with people who accommodate it. That would make sense to me. The various 'loops' in her brain may only fire up around you and her mum because they are allowed to. OP may have different insight into this.

4. I am very aware that OP has already made some difficult and honest statements about boyfriends and is also now divorcing her husband. OP shows some insight into the fact that she is poorly and that other people are not the problem. Your sister doesn't seem to have that and this is extremely unfortunate for your relationship.

Op

Did you take any medication for this? It does work by diverting your thoughts away from the anxiety?

I had this too. It was roughly ten years ago. Bizarrely my child was born, very high needs and I no longer had the time to think about it.

It impacted upon my life horrendously and I had to leave a job I loved. My issue wasn’t about germs or contamination though. I can’t even bring myself to tell you what it was.

Even at the time I knew it was ridiculous but I was utterly powerless

Now when I get anxiety I tell myself it’s not my brain talking sense and that anxiety and the thoughts are not real. Which is true

We're just sending this over to our AMA topic.

@andalittlebitofpixiedust I think some reassurance is kind but maybe the reassurance needed is really just that you care, that you are trying to understand and that you don't reject them

I get quite angry when people mistakenly try to reassure me, specifically family members. Because it never helps me. But then I do feel hurt if they are simply cold about it as I don't want to be this way any more than they like it

@MrsMcGarry I'm so glad you recovered! Thank you for sharing

It sounds like you did have some actual compulsive behaviour though which you acted on - the not driving etc but either way it's awesome your in a different place now and I LOVE how coherently you've explained the difference between being anally retentive and OCD

I checked with my dd's therapist and she agreed : a high need for order is not the same as OCD.

Sorry @andalittlebitofpixiedust I can change compulsions, mine have morphed over time though I usually get stuck in the same ones repeatedly and add to them rather than swap iyswim. I guess it depends on the longwinded logic behind it but yes I might wash my hands simply because I've been to the bathroom or they're dirty... sometimes I might be washing as it's a compulsion and yes they do feel very different so if compulsions are things you sometimes have to do anyway I can understand her comment about brushing hair being different

Maybe someone else can comment on if they swap compulsions?

@Stephisaur great question... nope. I didn't judge other mums at all. I did do things like tell them I was worried about meeting up in case I worried them too. I did take antibac gel when a pregnant friend joined me on holiday and asked her not to kiss my child etc to make sure he didn't pass anything on. I did tell a pregnant cousin not to share food with my son just in case etc and I watched him like a hawk that he wouldn't infect her. I took the responsibility on myself ultimately to protect their babies.

I definitely haven't ever thought that they were reckless with their babies for doing things I wouldn't have done though. I just shut it out tbh where I couldn't possibly do anything myself and saying anything would have been upsetting to their pregnancy

@gesu I haven't maintained relationships. I am divorcing ex husband but there's a much longer story to that also however if it didn't exist I do think OCD would still have destroyed my marriage. It's destroyed some close friendships. It's sabotaged potential relationships and I imagine it may still do. It's hurt my family and it may be affecting my child. It's a horrible illness.

BUT I do feel very sad and guilty and sorry about all of that.

I think @andalittlebitofpixiedust possibly has a point to consider that there could be more than OCD for your sister. I think OCD is a very selfish illness- it's taken from me so much, from my family, from my friends, but from the bottom of my heart I know I don't feel anything but guilt and sadness for that. And I do think it's always worse for the person with it, however it's still so fucking shit for those close to them that it can be difficult not to be angry with them

@Melliegrantfirstlady no I personally didn't get on with medication because I saw it as a risk to a baby. I did try and would always quit unable to bring myself to continue in case it damaged a baby. Those leaflets in meds boxes should probably be removed before given to people with OCD but that would be unethical and we'd only google it anyhow 😂

I've got to a place where sometimes I will use CBD oil though

Did you?

I hope something comes along and distracts me away from it soon! In my heart I feel another baby would I guess but who knows, quite possibly it wouldn't.

I understand struggling to say what it was, thank you for sharing that. Hopefully if anyone else reads they won't feel so lonely if they are facing similar intrusive thoughts

Thank you @LornaMumsnet

I have OCD too. Dx 12 years ago but really lifelong. Just managed to hide it until then.

Erp & cbt have not worked for me and I get very annoyed when either medical staff or other OCD sufferers INSIST it works for everyone. I am on other forums specifically for mh inc specifically for OCD and I'm far from the only one with this experience. @LoveMyJob1 - I think that's an important piece of info for you & your colleagues too.

Ditto meds don't work for everyone either. I'm still trying to find a medication regime that works for me. Again medical staff can be quite rigid themselves in their ideas of what works. I wish they'd improve their listening skills.

I also don't have a thing I fear happening as a result of the contamination. I just cannot cope with the feeling, the idea of something I need to use being contaminated, or something I have to touch.

Regarding passing on to children, there's believed to be a genetic element too. Dd doesn't fear contaminants like me, but does have traits re order and things being in 'correct' place which I don't.

"When rituals had gone as far as controlling the way I ate a sandwich" I can relate to that. How I make and eat a sandwich is full of rituals.

And yes I too hate the flippant "I'm so OCD" when what they mean is just they like a certain thing tidy.

I'm not actually sure when I first realised, I've put so much effort over the years into hiding it! The point at which I got diagnosed I had been aware myself for some years. The Dx happened because I stopped being able to do basic necessities because of it eg eating.

Op do you get frustrated at the LACK of understanding from some people within mh services who frankly should know better?

Hi @Graphista thanks for sharing that. I guess my experience with ERP was so positive that I'm a strong advocate for it. I do think it's quite possible had I had a different therapist I may have had less success. My therapist was a really good fit for me. Definitely some transference going on where I really bloody miss seeing him once a week and tbh even with my counsellor now although that's not OCD specific and coming to a close... I'm really going to miss him too. Totally unethical and I get how inappropriate it would be but I would have loved to have actually been friends with these men. I think the therapy combined with the match in therapist was perhaps the magic bullet in my case... @LoveMyJob1 if you come back to the thread can I ask if you ever feel the match isn't good with your client and that hinders their progress at all? It's a bit scary for a client to raise it, I've had some counselling in the past and I knew the lady was wrong for me and it wasn't helping, and probably making me worse but I kept going as I didn't want to upset her

But of course I only speak for myself, not everyone with OCD and clearly we are all different, which is why it's great others comment and point that out so obviously to those who want to learn more about OCD

Yes some MH professionals annoy me tremendously. Even in the MH profession I think it's often quite misunderstood. It definitely took a long time and my symptoms getting much worse before diagnosis - in hindsight it could have been diagnosed a lot earlier. And that annoys me. It also really annoys me when crisis team are so uninformed and try the unhelpful things that family or friends might out of ignorance because they are in a position where they SHOULD be trained to support not hinder and it does more damage I think when it's someone who claims to know what they're doing who just so they can feel like they did something tries to tackle all your problems in 30 mins in your own home when it was the last thing you needed and just never going to happen so your more anxious after they've left not bitter at all ---- lol

I would like to ask... What triggers it do you know? Can you remember a time before it started? I'm fascinated by whether it can indeed be "learned" from older family members, whether there's a genetic element or whether it can be brought on by trauma or other mental health conditions such as attachment disorder or anxiety. I'm interested because a close relative suffers greatly with this and I've wracked my brains for an answer to why?

When I ask triggers I mean what started it in the first place ... Sorry if I am not being clear.

@Babymamamama probably different things for everyone. For myself I certainly had plenty of trauma and felt incredibly out of control, spent some time in care, sudden deaths etc. I definitely used religion for a long time in my life to provide myself with security and a sense of control. I also had fertility problems so again a lack of control over what I wanted most in the world - a family of my own, security and stability.