Long term

[greenpigeon]

Hello everyone,

I’m February of 2024 it will be 5 years since I was diagnosed with OCD. I’m currently 18 years old, meaning I was 13 when I got my diagnosis, but I’ve been struggling for longer than that. Since I was 11.

I’m really struggling at the moment to come to terms with how much time I’ve lost to it. Luckily, I think I’m on the road to recovery as I am now doing things I never envisioned myself being able to do. I know that I have many years in front of me to enjoy, but I’ve missed out, and am still missing out on growing up and being a teenager.

My friends have all experienced so many things that I’ve never been able to even entertain, and I’m only just getting around to being able to do ‘normal’ things.

It’s mainly contamination OCD, so it affects stuff important to me, like relationships and touch.

Anyone have any advice or how to get over the feeling of guilt and sorrow towards the years I’ve lost?

Or advice on how to keep fighting for what I want and not what the OCD wants?

And more specifically to contamination OCD, how to build on physical touch and intimacy?

Thank you :))

[UKmum68]

I’m so so sorry that you have been through so much and had so much taken from you. I’m a mother of a 20 yo daughter who feels the same re what she has lost out on. It’s a terrible awful disorder. I am so so pleased to read you are on the road to recovery. I don’t have any pearl of wisdom re your loss. I just wanted to send you some virtual hugs. I think it’s super important to grieve the losses and give yourself some self compassion and kindness. Do you have a therapist who can help you process this? My take on “what the OCD wants” is that it doesn’t know what’s best for you, you know what you want, the life you want to love and ocd’s only mission is to keep you living a small life. Every time you don’t do a compulsion you are strengthening your true self and your future free life not rating stuck. You’ve had enough loss of living. I am not a therapist, just a mum learning about this. Keep going, one day at a time. Maybe someone else with more expertise can offer some help, post again if no one responded incase your post got missed by active people on here with more expertise! Sending love and belief in your recovery. 🙏🏼

[greenpigeon in reply to UKmum68]

It means so much to have people understand and appreciate how hard it is. I hope your daughter is on a positive journey with recovery. You sound a lot like my mum, who is absolutely so supportive and amazing, and your daughter is so lucky to have you. It’s taken away a lot of my life, but I’m determined to not let that happen for much longer. Thank you ☺️

[Natureloverpeace]

OCD has a way of robbing us of some important things in life such as time with friends and family, our original chosen career path, marriages, etc. Some of these things we can get back and some we can’t. It’s okay to grieve the loss of what we can’t get back. You obviously value the physical touch of loved ones and you can get that back. I kept letting OCD taking away more and more of what I value most which is time spent with my loved ones and the freedom to enjoy it. Contamination was a big part of it. It got to the point where I avoided them and didn’t let them in my house. My world kept shrinking. I spent 20 to 21 hours per day doing compulsions. That didn’t leave much time for family. Obviously, not sleep either. I finally said screw this and became bound and determined to face the OCD bully no matter what so I could get back what I value most, time with family. To be able to hug them again. To not be hypervigilant around them. It was worth the risk. It turned out that the OCD bully was feeding me a bunch of lies. I waited until I was in my late 50’s before discovering this. Please, don’t wait that long. I can’t get back what happened to my career choice and where that may have led. Who knows what have happened for sure with that anyway? I’m heavily involved in the OCD community, OCD education and advocacy now. Without OCD that wouldn’t have happened. Keep your eyes on what you value and move toward that no matter what crap OCD tries to trap you by.

[greenpigeon in reply to Natureloverpeace]

During lockdown I hardly left my room my ocd was so bad. I went a full year and a bit bit hugging or touching anyone, not even my mum. The feeling of affection from the people I love is such a strange feeling. Like I’m so overwhelmed and disgusted, but at the same time, I feel so loved and so proud of myself. I hope the little touches from the people important to me eventually make me feel safe enough to venture further. I’m 18 and already a year behind at college, but I’m determined to not let ocd take away my potential for a good career. Even though that is a big fear of mine. There is never a ‘right’ time to fight against part of yourself, but there is a need for it. And I’m determined to do it. Congratulations on your recovery! And thank you for sharing your journey to help others (especially me :)) ☺️

[deValentin]

1. How to get over the feeling of guilt and sorrow towards the years I’ve lost? If one invested time and energy in OCD in the past and didn’t get the desired results, one faces a choice: to lament about the past, to keep investing in OCD (I’ve got so far, I may as well continue) or to make a fresh start. The last option is more difficult at first, but more rewarding in the end.

2. How to keep fighting for what I want and not what the OCD wants? Especially in times of stress, the temptation will be great to invest time and energy in the search for the complete elimination of all possibilities of contamination if that’s the area where you have personal vulnerabilities. Resist the temptation, accept some uncertainty, and overall behave in such a way as to give yourself and content yourself with good reasons to be serene. It’s a struggle first, more so if OCD was part of your life for a long time, but it gets better with the passing of time.

3. How to build on physical touch and intimacy? It’s a gradual process. It’s no good to directly fight feelings of anxiety or aversion. With habituation, tormenting thoughts about far-fetched possibilities are going to leave you alone more often, and enjoyment of physical touch and intimacy can be restored, and vice versa.