I feel so sad that my mental health (namely OCD) has ruined years of my life 😔

[Lostpotential]

I've NC for this. Basically, I've had OCD since I was 11 years old. I'm now over 45.
I didn't know what it was for several years, then at age 18 I read an article and knew it was OCD, but I was scared of what the medical fraternity might do to me, so I didn't get diagnosed by a doctor until I was 27. I've tried various things that sometimes help a bit, but then it gets really bad again.
It's absolutely hell at times. Intrusive thoughts, then compulsions to re-trace steps where the thoughts took place and make sure I have good thoughts instead. Also having to wash thoughts, words, conversations off my hands, clothes etc (it sounds so bonkers writing it down). I've actually had to get trains to re-do journeys if I felt I had the wrong thoughts, and need to replace the journey with good thoughts, which I have to write down in case the intrusive thoughts (which are the opposite of what I actually think) return.
So, it's cost me a lot of money and time.
I've suffered severe depression at times as a result; and basically have been malfunctioning on and off for years. It's a secret illness, so many people have no idea, and probably wonder why my material life is so challenging - renting from a terrible landlord (only thing I can barely afford) in and out of work, often penniless, lifelong single mostly.
I had such potential at primary school; and if it hadn't been for trauma and subsequent mental illness, I truly believe I'd have been a professional artist (my great early love), been married and had several children (always been very maternal) and had a lovely home, as I'm naturally a home maker, if given the opportunity.
I recently lost my beloved dad. He was a huge support for me and I for him. He'd also suffered trauma and we really understood eachother. So, I'm grieving terribly.
Yesterday my OCD was so horrendous I found walking to town to get shopping and back unbelievably challenging (took ages) I've been crying loads since, as I'm just exhausted, and don't understand why it had to be like this.
Not asking for help or even advise really. I just wanted to share, and wondered if anyone else feels similar about their mental health situation? Solidarity if so.

Sorry you’ve struggled so much. I don’t usually post (just lurk) but I’ve made an account to reply to you.

I have had OCD for many years. It’s a lot better these days although it can flare up when I’m stressed.

What I’m about to say might sound obvious, but I am sharing it because it helped me and not because I am some idiot who doesn’t understand OCD - which incidentally the World Health Organisation includes in the list of the top 10 most debilitating health conditions of ANY kind.

So some research has shown that people with OCD do not get the sense of completeness when doing compulsions that other people get when finishing a task. And what helped me was realising that however many times I repeat a compulsion, it is never going to be enough, it is never going to feel finished and done and right and good enough. That the 50th time I do it won’t feel any different to the 5th time. Rather, whenever I do a compulsion I am restarting the cycle that leads me to need to do the compulsion. Kind of like how people who smoke restart the cycle of nicotine cravings whenever they have a cigarette.

And the more you do it, the more you chase that sense of completion, the more it feeds the need to do the compulsions and the worse they get.

I learned some of this from a book called Brain Lock. It’s quite a controversial book in some OCC circles (I don’t know why tbh) and I didn’t actually read the whole book, but learning this was an absolute a-ha moment for me. That doing the thing again and again is not going to lead to me finally doing it well enough that I can stop.

I just wanted to share in case this helps you too.

Hey op. Nrtft apologies but your first couple of posts resonate. I've had ocd since I was at least 6. Its consuming and I often hate myself for things I think I've done wrong.

Im so sorry about your dad. It must be an even bigger loss if he was your main support network.

Re having kids etc you can do this alone when you feel well enough.

Sending support

To add, my friend said to me recently 'youre a good person with a little devil in your head' this helped me make sense of a lot

Not working and living alone must mean you spend a huge amount of the day alone and doing nothing…. This is going to leave a lot of time for you to dwell and catastrophise.

is returning to work very part time a possibility?

Thank you so much for this. Gosh, it's so kind of you to create a profile just to respond to reply to me.
I'm so pleased to hear you're generally a lot better these days, on the whole. Though sorry you still have times when it returns if you're stressed. Stress always makes mine worse.
I wasn't aware of that research. But, it makes sense, as the OCD quest for the 'just right' feeling, can feel life long. I think I've done enough to satisfy the OCD monster, but then it rears its head again.
I must check out Brain Lock. Have you heard of the book The Imp of the Mind? I've not read it, but heard it's great, and I plan to read it at some point.

Thank you so much for your post ❤️

Thank you for your post. I completely understand why it would seem like that. But, honestly it's the other way round. My default is to be very busy, creative, and do voluntary work as well as paid work etc. It's more that when my OCD is very severe, I'm simply unable to.
I'm working a bit at the moment. I'm not unemployed. But, I'm not functioning well currently, and find job applications extremely difficult. I'm rarely doing nothing though. Many hours spend doing compulsions. It's extremely difficult to explain the overwhelming power of it. It's so awful.
I really appreciate your input though, and I do agree that being busy and distracted is a really good thing when able. I'm just not always able.

@Helplessandheartbroke thank you. I'm so sorry you've had such a long struggle too. It's very hard.
Alas, I think I'm too old now on the reproductive front 😔
I like to think there's another version of me in a parallel universe who is a mother of many.
Sending support back

sorry I thought you didn’t work, but you are working part time and also volunteering?

So sorry to hear. It sounds so debilitating. My adult DS has OCD - he’s always been highly anxious and I think (from what he tells me) it started around age 10/11. He has pure OCD so his brain will basically tell him he’s ’bad’ in various ways (he so isn’t). I do worry about his future but he’s just about to finish his degree - he’s had a lot of mental health input - have you managed to access services recently?

Genuine question, what did Jesus do?

The best approach is CBT (with Exposure Response Prevention included later in sessions) by a BABCP accredited CBT therapist or HCPC psychologist. The right medication can help alongside evidence based treatment. EMDR is very helpful in specific cases. Please don’t waste any time, money or hope on unqualified practitioners or approaches that often do more harm than good. @Eyesopenwideawakehypnosis is not indicated for OCD and I wish you would stop touting for business on various threads. It’s very unfair.

@Nowpause It's OK. No need to apologize. You didn't say anything wrong, and I appreciated that you were trying to be helpful. I also completely understand that OCD is a very confusing condition for people who've never been afflicted by it. It might seem that OCD sufferers can overrule the obsessions and compulsions, but unfortunately they nearly always overrule us.
I haven't had a normal full-time permanent job for years (I used to, but they never lasted long) so I've discovered temporary agency work and seasonal work is more doable these days. I work in a self-employed capacity. I work when I can, and live on the savings from that work when I'm very severely incapacitated by OCD. I've done lots of voluntary work in the past, including relatively recently. Not currently, but I hope to again if possible. I really don't feel I can at the moment. Hopefully soon 🙏

OP, you write really well. Thank you for articulating what’s going on in your mind so well. It really helps those of us who don’t have it, understand what it must be like for those who do. I have read accounts of people with severe OCD who have successfully gone through therapy, and have managed to get their symptoms under control. I hope with the right therapy/support that things work out for you. My DC has mild OCD, and has had it for so long as i can remember. There have been times when it has been worse, but for the last 3 or 4 years it has been mild. I always worry that is just latent, and will become worse. I wish I had the OCD, and not him.

@Chiaseedling Thank you so much for your message.
I'm so sorry that your son is an OCD sufferer. Yes, I think pure O can be the most distressing type. I've had various types, and it's always evolving. But, currently a mixture of contamination OCD and pure O.
Yes, it's actually a sign that your son is an extremely ethical moral person. Most OCD sufferers are highly conscientious, which is why the thoughts are so distressing. Ego-dystonic I think they're called - thoughts that are the opposite of our real thoughts and our treasured values. I sometimes get ambushed by the weirdest thoughts, and I know I haven't manufactured them myself, as they're so contrary to everything I believe. The contamination type comes into play, as I feel the thoughts have contaminated me and my environment, and I have to wash them off. Takes ages, and exhausts me.
It sounds like your son is doing brilliantly, and has had great support, so hopefully he has a very bright future ahead of him. I wish you both well.

@Lostpotential there's other ways to have children. All is not lost.

Id not change my life but I will say since having ds my ocd is ten fold. The worry for this small human and the obsessive thoughts and worry is so much worse. This is where a lot of my flare ups lie.

Then there's the obvious 'did i just run someone over' thoughts and driving back round the block to check.... its exhausting. I've tried cbt and intense cbt and it helped give some coping mechanisms. The best advice I've ever had on ocd was a poster on MN, she spoke about taking your thoughts to court. Judge and jury and evidence. She also said court must close for rest so allow your thoughts but at some point in the day tell them court is closing now until tomorrow. I hope this can help in some way.

Nothing happened apart from my symptoms reducing while I was concurrently listening to the hypnosis videos

Hi OP, this sounds really hard and resonates because a family member is suffering with something similar. Out of interest, have you noticed if the OCD gets worse after illnesses?

Aww, thank you so much.
It's encouraging to hear accounts of people who got better. Mine has been much better sometimes than at other times, but it's always there to some extent during waking hours.

I'm so sorry to hear about your DC. It's good it's only mild, and hopefully as he's aware of it, and already been addressing it to some extent, it won't get worse. I hope he can completely recover.
I wish you both well.

Oh gosh, yes. I've clocked this very recently in fact. I had a mild brush with a virus relatively recently, and my OCD went through the roof as a result. I googled it, and saw a discussion on Reddit about it, and someone suggested that it might be due to inflammation?

I'm so sorry about your family member. I hope they can get the right support ❤️

Thanks you, I appreciate that. Look into PANS PANDAS, it’s a slightly controversial diagnosis but you might find something that resonates - your description of bad thoughts sounds so familiar. Yes, it’s all about inflammation, my family member is under a consultant who is currently treating with antihistamines and ibuprofen. You should also look into supplementing with vitamin D if you aren’t already. Best of luck, I know how debilitating this can be.

Just to send you virtual hugs. I think you are an amazing person to be coping so well. I think you need to grant yourself the good thought that none of this is your fault. I would also second looking into ASC. Have a good evening I hope tomorrow is better for you.

@HorrorPudding thank you for your advice re CBT and ERP. Unfortunately I definitely can't afford to private, but I'll definitely see what's available these days on the NHS. I've seen counselors in the past, but mostly just talking, and although comforting, I can't say it healed me in any way. I definitely think ERP sounds like it has a good track record.

Thank you so much @Pippatpip I definitely don't think I'm coping well, so it's really lovely to read someone else say they think I am ❤️
Thank you so much for your other lovely words too. Guilt is a huge component of OCD for me. So, to see it written down that it's not my fault is very liberating.
I hope you have a good evening too...

Hi OP, my DD has a diagnosis of severe OCD. Local mental health team etc couldnt cope as they usually have poor understanding of OCD, so I managed to get her referred to specialist services. I did all this with the support of OCD Action and OCD UK, two great charities who both run helplines and online groups for sufferers and their families. Yes you should be able to access free treatment but you need to know what you are looking for so I'd definitely get help. My DD was housebound for over 6 years and still struggles, its something you learn to live with though, its not curable but you can get it under control.

Its making you miserable, please seek help and very well done for reaching out on here.

https://ocdaction.org.uk
https://www.ocduk.org

Thank you all so much for your support. I think I will always feel very sad about my lost years and lost potential. Obviously currently compounded by my grief.
But, the level of kindness and empathy I've experienced on this thread has blown me away.
I'm very tired now, so might go offline for a while now, so please don't be offended if I don't read or reply to more posts this evening. I'll catch up again tomorrow, and I still have some earlier lovely posts to reply to.
Thank you all so much again. The best of Mumsnet here today ❤️