Hello. Our son has been struggling with a severe bout of OCD for the past year. He’s done in-patient, partial hospital and intensive outpatient programs. His psychiatrist has been adjusting his medications. He’s been doing ERP for the past 9 months. His compulsions are confessing, reassurance seeking, handwashing, checking, and ruminating. His obsessions/intrusive thoughts change a lot but mostly involve health anxiety/hyper responsibility. He fears he will somehow become ill from bodily fluids and, in turn, will pass this illness to loved ones. Public restrooms are a MAJOR issue. We feel horrible for him as he is always so anxious and depressed, feeling that he’s not “getting better”. We do see improvement but it’s a slow process.
We could really use some positive stories to keep our hope for his recovery going. Thanks for listening. Sending out prayers for all.🙏🏻❤️
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I wish I could tell you that your son will undoubtedly recover from OCD, but I can’t. However, you see improvement in your son’s condition, and that’s a good sign.
The problem with many psychological disorders (anorexia, hyperphagia, addiction, OCD, etc.) is that sufferers want and, at the same time, don’t want to get better or aren’t willing to pay the price for their full recovery. The other day, I was watching a YouTube video “War inside” where the sufferer was saying, “When your whole day is OCD, if you can get 40 seconds, 1 minute, 2 minutes, anything, it’s worth it. It’s worth scrubbing the skin off your body just to get 2 minutes of peace and quiet. When it’s all day, every day, when you go to bed thinking about it, you wake up thinking about it, you have nightmares about it, that 2 minutes is worth more than anything in the world.”
When you son gradually realizes there is another way than OCD to end his torments, that is, he can use a public bathroom and more or less feel the same way as an OCD-free person would, then he has, and you have, good reasons to be optimistic. Therapy doesn’t feel like a burden anymore, it’s a ticket to a freer life. Once hope returns, it becomes easier to accept that recovery is indeed a slow process with many bumps on the way because one sees a reason to be patient.
Thank you! This is exactly what he tells us. When it’s at its worst, any amount of relief, even seconds, is worth it. In addition, no sooner does he overcome one obsession, then another pops up. It’s heartbreaking. Thanks for listening you for your reply. God bless you.
Look up Shannon Shy on Facebook and You Tube. He is a retired marine who was very ill from OCD and recovered. He helped me along with my professional help.
Thank you! We will definitely look into this. He listens to a lot of podcasts and does a lot of NOCD groups, etc. He’s trying so hard. Sending prayers for your continued recovery 🙏🏻
It's normal not to like using public lavatories or restrooms, and many of us try not to! But that is not the same as having a major problem with them.
I've been really incapacitated by OCD myself - to the point of not being able to leave the house and often barely able to do anything apart from lie on the sofa. But thanks to some good therapists, medication and CBT/ERP - some done with therapists and some on my own - I've managed to make a good recovery and do lots of the things I missed doing.
And so can your son. It's difficult to respond rationally to OCD - somehow the part of the brain that is set off by OCD fears manages to shout louder!
Still, it's good to remember that most germs are harmless or actually beneficial and we need them in our lives.
Nobody much likes having to do with strangers' bodily fluids, but the chances of getting something nasty from a public lavatory are fairly remote if you follow normal hygiene rules.
It is often slow progress, getting over OCD, but it can be done. He's in the right place for it, and doing the right things.
Thank you so much! This is very encouraging. He does all of his exposures but really struggles with the compulsions. I pray for your continued recovery.
Dear parent (you sound like the mum :-), I am now 47 but have OCD as from 14. And I have a job, a family and life is beautiful. I still have severe phases of OCD and then it goes... It seems that you have put everything in place, now I would recommend to do the most difficult thing: wait and see. Your sun probably needs to loose some time, some opportunities today, in order to shape its future projects, beliefs and success. Best regards., Ourson.
Thank you; this is encouraging! We understand that there is no real cure but we do believe in the treatment. Yes, all we can do now is wait and see. God bless you.
hi there, it’s a long road and a confusing one I’m sure others will agree! Imagine having this beautiful tunnel that all of your thoughts go through. Every time you have a compulsion, ruminate, check, it goes through this tunnel and it’s the route your brain always takes. Now we have to make a new tunnel and a new way of thinking and break away from those compulsions. The tunnel isn’t built and it takes ages. Gotta cut the grass down, gotta start building. Everytime you take back some control and don’t do a compulsion, (it’s so so so hard and takes so much work and some days it’s the worst and some days you win a bit) you take something from that old comfortable habitual tunnel and you put it in your new tunnel. A light, a brick, a hand rail, goodness it depends on what you visualize. But it takes work and time and it’s exhausting to relearn a different route for your thoughts to go and allow yourself to feel the uncomfortable of not doing the compulsions. It takes time to get comfy using the new tunnel, just like it takes time getting to the point of exposing yourself to the feeling of not indulging in a compulsion and allowing yourself to come down from the panic of not doing one. It’s exhasting. Just something that helped me to see my journey ahead at the start of erp. Same here with 9 months and it’s hard but working slow and steady! Some days are still so hard and then I come out of the cloud quicker or I have a small win. Other days are bigger and brighter on wins. I Gotta do the work! My closest know everything and are kind but also not going to feed the beast for me. when I am in a spiral or reassurance seeking they call me out gently if I don’t myself. They love me and I know it and I can come to them when I am having a rough one just to get it out of my brain without reassurance from them. Just an ear and maybe Coffee. You’re doing great with support, your son is working through something a lot of people underestimate and he’s amazing for facing it with erp. Go him!!!
Thank you for your encouragement. We understand that there is no real cure, but we definitely believe in the treatment. We do our best to be supportive and understanding but, truthfully, we do get frustrated. We understand that we shouldn’t give in to his reassurance seeking but it so very hard sometimes, like when he cries and begs for “just one more time” , or “I forgot what you said”, or “I don’t know if I worded it right”, etc. it kills us to see him in so much pain. We pray for your continued used recovery 🙏🏻
Just know each time he is begging, your reassurance is feeding the beast and making it stronger and it will be hard to feel the bit where he feels the full strength of not getting what the beast wants but that’s what we need to take power back from. Feeling it until it’s gone through and realizing nothing bad happened gives the power back to him. You got this mama.
Hello, how I feel for you all, our son has Body Dysmorphia, a by product of Ok CD, we were told it can be genetic, my brother and sister in law both had severe OCD They got better has they aged but our son is 45 yrs old and has had this terrible illness since he was 19. When the NHS dissolved all there mental health teams my son fell through the cracks, he only had therapy for 6months and was told there was no help available anymore. He was on Fluvoxamine for 22yrs with no help, we could not afford to send him privately so persevered but we had a major set back 5 yrs ago and got him to see a psychiatrist at our local priory hospital, he now, like you son, is changing meds to find the one that works and we have found a private therapist whom specializes in OCD/BDD and he has had 4zoom calls with her, next week we travel to see her and this will be the start of what I hope is the long way home. Yes, it's killing us financially but it's our son and you cannot put a price on that. I will sell up and live in a tent to make sure he is better . Good luck to you,
Thank you and we pray for your son’s recovery🙏🏻 This is a horrible disorder, and like you, we will do everything and anything to help our son. God bless you.
It can be quite a problem getting treatment on the NHS, but have your heard of the OCD and BDD unit at Springfield Hospital in Tooting? They do take patients from all over England and I had a stay of four months there some years back. It's good that you've found a private therapist you can trust, but it's so expensive.
I found the Springfield Hospital unit really helpful - it's fairly small with 12 to 14 patients at any one time. It might be worth your checking it out.
Thankyou so much for your reply, it gives us hope that our son can get better, I have never heard of the Springfield hospital but will definitely check it out, thankyou. God speed🙏🙏
Here's a link to the Springfield unit. I'm afraid it depends on getting a referral. But the treatment is very good - I found it intensive but gentle. Patients are free to go home at weekends if they wish.
Just one more thing - the sort of people who get BDD are not deformed at all - in fact many are physically beautiful! Their mirror reflects a normal, beautiful image - it's just their brain distorts it into something ugly!
also. ERP helped me to stop being afraid of going outside and now I go out locally sometimes at times that are totally not comfortable with me on purpose and it’s a pretty big deal woo!. Getting free takes a lot and sometimes my ocd is still super debilitating but I’m far from where I started. Diagnosed in 2011 and it hit me like a truck again this year. (Some context of me)
Hello - I'm sorry that you, your family, and your son are going through this. Growing up I stopped talking to people about what I was feeling (especially my parents) since I found it distressed them so much. At my lowest point I felt as though I would never be whole or well again and that my life would be forever consumed by this overwhelming fear. It was like being thrown in the deepest pit of hell. However, today (I'm 43) I have a wife and family. I have a good paying job that I (mostly) enjoy and we own a house. I'm able to enjoy life and actually "be" there with the people I care about. The OCD comes and goes, but having done years of therapy and finding the right medicine has greatly improved my life.
I can probably guess how your son is feeling . He's probably feeling that he will never get better, that the medicine won't work, that he's worthless or broken. All of these things are lies that his OCD is telling him. He does not know the depth that he is loved or cared for. He is not alone and there are tons of people who want him to get better (including on this website).
Dealing with my OCD has been the most difficult thing I've faced in my life, bar none. However, it has been one of my greatest teachers as well. It has given me great compassion and empathy for those who are suffering and allowed me to deal with other life issues a lot easier than those who don't have it. It does take a lot of work and time though to achieve results, but it is possible to live a productive and happy life even with OCD.
I really hope you and yours find the peace you deserve. God bless you.
Thank you so much! He’s lost so much due to his illness and he says his brain doesn’t work like ours. He feels “broken” just as you say, and hopeless and depressed. His fears are so strong. One day at a time…
Sending prayers for your continued recovery. God bless you.
Thankyou for sharing your story. This gives me hope where I now only have desolation, your story is an inspiration to us. This just proves that the right meds and Therapy really do work, me son is desolate, numb and in a very dark place, he has only just started therapy and is dreading exposure therapy, he cannot see what a lovely, handsome man he is and it breaks my heart, we love him so much. Your story has warmed my heart and given me hope. Thankyou and much love to your family.
OCD can be so debilitating, but the good news is that therapy with medication has like an +80% success rate. I know for me my OCD spiked when I started therapy and meds. I wasn't running from it anymore and was brining it to the forefront of my mind. Looking back, that is when things started to change though. I had to learn new skills to cope other than performing compulsions. When I started ERP I could only resist them for about a minute or two. However, 2 minutes became 15, then 30, 1 hour, 2 hours, a day, etc. Now I can say, "I'm having an OCD thought about something. I'll perform the compulsion in a week". After that I'll just forget that it bothers me
It's good your son has your support. Understanding family and friends goes a long way in recovery.
My younger son also has OCD and in 2020 it was manifesting in ways and at levels I didn't know existed. 2 years ago it somehow became even worse due to a stressful event. Most days were filled with OCD from morning until night and we struggled every day to get through the day. Our lives were enormously impacted. My physical health was also affected. His biggest compulsion is to get reassurance from me so I understand how difficult it is not to give especially when they are saying something absurd or negative towards themself. My son was hospitalized a few times as his OCD can turn into depression and suicidal thoughts as the obsessional thoughts don't stop and/or are very upsetting to him. My son has tried many different programs that claim to provide quality ERP. They didn't. There have been moments of progress and then setbacks. I cried many days that our life was always going to be like this and that he may need to be in an institution for his life or worse.
Now to the hope! Over the last 6 months or so (especially the last 2 months) my son has made significant progress. We don't have "OCD reassurance time" most days and he has started recognizing his OCD and resists engaging in it. His distress tolerance has increased significantly which is also a big influence. I will tell you what worked for him but everyone is different so your son may respond to something else.
1. Diet is HUGE. It seems simple and will not fix his OCD but it will be difficult to get better if he doesn't eat 3 healthy meals a day. Sugar, sodas, etc will only feed his OCD.
2. Exercise. I know this is hard to make happen. They all are. But any amount is great. Going for walks and being outside is a bonus.
3. A quality ERP therapist or program. We have seen many that have not worked. We are fortunate to have found an outstanding program called In Stride Health. I only think it is for kids through young adults but am not sure. Our 1st therapist there was not knowledgeable but our 2nd is the best I have ever known. She understands OCD and wants to see my son get better.
4. Ketamine. It helps heal the brain's broken paths. SSRIs and typical psych drugs do not. Esketamine (spravato) is an insurance based ketamine that also works. It is not prescribed for OCD though so you will need a diagnosis of treatment resistant depression or depression with suicidal thoughts. This stuff is a game changer for most people but not everyone. There are also clinics and at-home ketamine programs. Some are ridiculously expensive so you have to look or try the esketamine.
5. Getting your son to do things as much as you can - a job, school, volunteering, special interests. He should try to stay busy and feel good about himself.
6. Acupuncture. Again, a quality provider is key and can make a huge difference.
7. Meditation. Insight timer has been a hugely useful tool.
None of these items are done easily, and I have to remind daily. He also has a regular counselor he sees weekly. They work on self esteem and acceptance. Of course, resisting reassurance and setting times up during the day to give it and that's it - no more. He also takes supplements.
I have also heard great things about the Bergen 4-Day OCD Treatment but could not afford it. There are programs in California and New York that thankfully offer it now and its a little more affordable. It is on my radar. And I am also hopeful psilocybin becomes available soon. Psychedelic therapy is a game changer. It is available in Oregon and Colorado now.
Please keep hope! And take any time for your own self care! It is extremely difficult being the parent of a child with any health issue. OCD has been so tough. BUT your son will get better when you find what works for him!
Hello. Sorry your son is dealing with this. Everyone's situation is different, although I've had OCD for most of my life to varying degrees, and my daughter had it when she was in elementary school. For a period, I was disfunctional, but most of my symptoms improved, and the OCD has been intermittant for the past twenty years, and much milder than it had been before. I've been able to function, graduaute college with good grades, etc.
My daughter also greatly improved and has been a straight A student the last few years. A book that really helped me, although written for adults, is "Brain Lock" by Jeffrey Schwartz. It teaches a technique called cognitive behavioral therapy ("CBT" which is also known as mindfulness). Luckily, since I myself dealt with OCD, I was able to help my daughter, and I did give my daughter a lot of tips from the book (there are a lot of easy to remember maxims in it).
I got an OCD book for kids to read with my daughter which was good to I think- if I'm remembering correctly, it's called "What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD". We used to read through parts of that at night.
Exposure and CBT are the two main forms of OCD treatment from what I understand, and I think CBT is a bit newer. They don't contradict one another, so I think it's good to know about both. CBT alone brought me from C's, D's, and F's in school to straight A's. I think some doctors focus on CBT and others on exposure while some probably do a combination.
There is no harm in learning the main principles from "Brain Lock"- even if you read the first two chapters only you will come out with a wealth of knowledge. The key principle behind the book is the four steps (you really only need to know the first three), which are "relabel", "reattribute", and "refocus".
Most people I've met with OCD have managed to make great improvements. I hope things go well for your son.
I hear you. Similar situation with my adult son. Watch Brain on Fire on you tube. We are treating/testing for Mold and Lyme disease. Look for a Mold/Lyme literate doctor. Conventional doctors don't know these diseases well. Expensive out of pocket. My son's OCD has greatly reduced in the past when he moved out of the house. We are moving him to a new shed outside for now and hopefully with proper treatments/meds/herbs he will regain his mind and his life. Treatment inside a home with mold will not work. I am not sick at all and have lived in the same home for 30 years. But he was a toddler when he moved here. I believe your brain is setting alarms that something is wrong in your body. Sickness!!! But it can't say what so now everything it sends out alarms on. (Germs, thoughts, harm, relationships) Good luck this is a living nightmare.
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