As I’ve said before, one of the most heartbreaking aspects of OCD is the frequent occurrence of recovery avoidance. Obsessive-compulsive disorder is a potentially devastating disorder, but it is treatable. Yet so many sufferers are so terrified of treatment, and perhaps of even getting better, that they cannot bring themselves to even attempt Exposure and Response Prevention (ERP) Therapy.
So what can we do when someone we love has OCD but is not “ready” for treatment? The above article gives suggestions which include expressing our concerns to our loved ones, not enabling them, and continuing to live our own lives in a positive manner. So many families of those with recovery avoidance follow these recommendations as best they can. Sometimes there are positive results, and other times, the OCD sufferer continues to deteriorate before their very eyes.
It’s hard, especially for parents who are used to making everything “all better,” not to intervene. How can we just sit around and watch our loved ones get sicker and sicker? And so we continue to search for therapists, continue to learn everything we can about OCD and its treatment, and continue to look into every program and facility out there. These are all positive actions but the truth is unless the person suffering from OCD is ready to accept help, our efforts are likely to be futile.
To me, the big question is how can we persuade OCD sufferers to commit to treatment? We try talking to them, and taking them to a myriad of health-care professionals who also try to get through to them. We feel desperate, and resort to begging, pleading, and even yelling at our loved ones because we don’t know what else to do. They say we don’t understand, and it’s true, we don’t. Who could understand?
Other OCD sufferers. What if we could form a network of those who have suffered severely from OCD and have found their way back to good health? What if these people were willing to have a conversation or, as long as I’m dreaming, even visit with those who do not yet have the strength to fight? Certainly we have seen how blogging, connecting at conferences, and attending support groups can be beneficial. What I envision is an established resource, a speaker’s bureau of sorts, comprised of people who are willing to use their own experiences with OCD and successful treatment to help others gather the courage to pursue wellness. Not so much speaking to an audience, but one-on-one. Is this feasible? Does it already exist and I don’t know about it?
I’d love to hear your thoughts about this idea, as well as any other suggestions you might have as to how we can help those who avoid recovery. There must be a way we can make a difference in the lives of those who are trapped by severe OCD.
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” – Margaret Mead.
ocdtalk 
Absolutely brilliant idea. I would love to be a part of it.
Thank you Jackie, and thanks for reblogging!
Reblogged this on lightsallaround and commented:
Love these thoughts from my blogging friend Janet!!
Janet, this has been my prayer and my dream for my 15 year old and her recovery with her OCD. To me it would be part of the “miracle” that I am searching for for her recovery. The second part would be actually getting through to her to know that it is “treatable” and she deserves a life of “normalcy and happiness”. For her to speak to an actual person that has the same type of OCD would be huge. She does not really want to go to “group” with other kids even though so many suffer the same. I love the idea, it may help us parents too, and an objective view from a person who has come out on the other side might just be the breakthrough and light to go off to push them through. A wonderful idea!
Thank you. Yes, of course, your daughter deserves a wonderful life, and I think this is a doable idea with the potential to help a lot of people. Thanks for sharing, and stay-tuned as we keep talking and moving forward.
Thank you Janet:) anything I can do to help jumpstart this please know I am on board. As a parent I say “the sooner the better:)” to get them better. Please keep us updated thank you.
I remember when the first doctor that ever really helped me, looked me in the eye and told me that he had OCD as well as several members of his family, and that is why he decided to become a doctor and study anxiety and OCD. That, along with his wonderful demeanor, made me trust him and trust in the ERP process.
I was incredibly embarrassed by my obsessions and compulsions and it was easier to share them and be honest with someone who knew personally what OCD was all about.
The “network” you speak of is something that support groups have been doing successfully for years to support healing and recovery for all sorts of illnesses or change in life circumstances. Why not OCD? Though there are OCD support groups, not everyone is able to logistically access a group in their community, it would be so helpful to be able to reach out to people either online or through Skype. I have the greatest respect for people who take whatever burden or suffering they have carried, and use what they learn to help others.
A great idea Janet.
Thank you, Kris, and your story really supports this idea. You had the good fortune of having a wonderful doctor who had actually experienced OCD himself. Just what you needed! I hope to move forward with this discussion and get something started.
I would be willing to talk one-on-one with people about my experience with OCD and starting to recover. Actually, my therapist was able to find someone to talk to me early on, and I got to talk to someone else.
The first therapist to diagnose me with OCD (when I was a senior in high school) raised the question in my mind, but my mom concluded that that wasn’t my problem. None-the-less, the therapist could have done a better job: 1. Don’t tell someone they have OCD in a prayer when they can’t interrupt and defend themselves (“Dear God, please help Abigail realize that her ‘dis-ease’ is a disease…” – true story. But say it straight to my face, don’t tell God in front of me). 2. Ideally, the person with OCD should still feel in charge of their treatment: I didn’t want her to treat me, because what I heard from her sounded like her FORCING me to touch money (germ exposure), which is scary. It is a little easier if I CHOOSE to touch the money, and if I have a say in which exposures are done how and when. This applies to starting medication, too. 3. Deal with myths… I was afraid they would force me into residential treatment for my OCD (which wasn’t that severe at that point). So there was another instance of fear of loosing control that I didn’t need to loose. I know sometimes people need involuntary treatment, but when they don’t, it might help for them to know they are calling the shots still.
I think you are on to something both with the fact that the person with OCD has to be ready and with the fact that others with OCD can help. Outside of therapy, another older friend of mine had gone through OCD and was able to help confirm my suspicion that what I had was OCD and was treatable.
I also wish people had told me sooner that the depression I lived with wasn’t necessary, but perhaps some did and I just didn’t understand yet.
Thanks, Janet, for speaking out for people like me who have OCD.
Thank you Abigail, for offering to help and for sharing your story. I think your introduction to ERP shows how important it is to connect with someone who really understands OCD and its treatment. While the premise behind ERP Therapy might be easy to understand, it is not so easy to implement correctly. Just the fact that you felt forced, as opposed to having a say in your treatment, is huge, and can make the difference between accepting help or not. Thanks, as always, for your insight..
the ocd group on reddit might be a good network to tap into for this purpose.
I’m not familiar with that. Thanks for the suggestions!
I think your idea is wonderful, Janet, and I will be a supporter!
How I could have used support like this when I was a young girl suffering from this disorder. I had no support, and being alone with OCD was awful. I didn’t know treatment was available, and frankly, I had no advocate.
Sometimes I wonder how helpful I would be to someone else, since I didn’t travel a “traditional” route of treatment. I got help from medication first, then self-help from reading, then help from counselors, then self-help with ERP.
Thanks so much for your support, Tina! I think you would be a huge help to others, and your story shows there are different routes to recovery. While we all have our ongoing struggles, I know from your blogging that your life is so much better now than when your OCD was severe. To me, that fact is what would help someone who is suffering now the most………to see that recovery is possible and you can go on to have a great life.
I, too, would be willing to share my experiences with OCD. I was diagnosed over 20 years ago, when not many had even heard of OCD. I have just recently found a doctor, who is supporting me as I am wholeheartedly giving ERP a chance for the first time in my life. I agree with you Janet that OCD sufferers must be willing to accept help, and I also think it’s imperative one finds a therapist he/she is comfortable with and trusts.
In my darkest hours it has been the feeling of hopelessness that’s been most overwhelming. I think your idea is a terrific one! We need to come together to help each other find the hope we know exists.
Thank you so much, fai, for your offer to help. I am so glad you are moving forward with ERP Therapy, and I hope you find it helpful. You have suffered for way too long, and yes, I believe hope plays a very important role in recovery.
My son would like to get help. He is tired of every day battle of OCD. It took years for him to get the nerve to even want to try. Now, we find we can’t afford for him to get treatment. We feel like he’s stuck in a loop. It’s very frustrating sometimes! I think he would really like your idea.
Thank you for sharing, though stories like yours break my heart. Not being able to afford help is another important problem that needs addressing. Maybe at this point your son might be willing to try using some self-help websites, apps, or books? Feel free to email me if you’d like to discuss more, and stay tuned as we hopefully turn this networking idea into a reality.
Thanks 🙂
I have looked into the apps, but I would appreciate some guidance about which ones might be the most useful.
My son never used any apps, but from what I understand, Live Free from OCD is supposed to be a good one. Maybe start there? Good Luck!
Janet, I love this idea! I believe support is the key to recovery and managing life with OCD. There are not enough support groups available to people and some people are not ‘into’ group settings and would really benefit from individually connecting with someone who is going through the same experiences. Especially as parents of loved one’s with OCD, we can empathize, but we really don’t kow what it’s like. Sometimes just one conversation may be the difference it takes to help someone start treatment. I think we need to start more affiliates for the International OCD Foundation, because this idea should be started in our backyards. We are started the CT affiliate and this will be on our to do list for sure. Thanks for the great idea. Susan
Thanks for commenting, Susan, and I am so glad you are starting the CT affiliate of the IOCDF. There should be one in every state! Yes, this idea is great locally, because people can potentially connect one-on-one face-to-face (that’s a lot of hyphens :)). Please keep in touch as you move forward.
I found and still find that recovery is scary because my earliest memories are me being in chaos. Who am I without that chaos?
Peer support is a brilliant and proven effective form of treatment. I’ve seen great things happen in my own life because I had people around me who knew what I was talking about and they could share with me 🙂
Absolutely! Who else can truly understand aside from someone who has been through what you’ve been through. Thanks for sharing!
Janet – I love this!! Though I’ve had terrible GAD all my life, and certainly touches of OCD all my life, I suffered for 13 terrible years with severe OCD before I got the courage to get help. And I KNEW about the proper treatment almost immediately when I was first diagnosed. It’s just that I was absolutely, completely, and overwhelmingly terrified of CBT/ERP. I am much improved now after treatment, but of course, lots of things are still difficult for me. Perhaps if I had gotten the correct treatment early on, I would have gotten more control over my symptoms much earlier and maybe I would be that much more further along now. I love the idea of trying to help people make the decision to seek treatment for themselves.
The only thing that bothers me in the back of my mind when doing this, is that unfortunately there is such a lack of good treatment providers. I hate the idea that I would encourage someone to find treatment only for them to not find a good provider or one that is subpar. But I guess that is a completely different issue, isn’t it?
In any case – sign me up! Sufferers need to know that proper treatment works and that there is life beyond OCD.
Thanks for your support, Sunny. I think you bring up a very good point………what is the point of encouraging someone to go for treatment when the treatment they need might not even be readily available to them? We certainly don’t want to set people up for disappointment and failure. Something to consider as we move forward with this……….thanks!
My child has severe and persistent OCD that has left him mostly homebound for the past 8 years. My child is unwilling to discuss his OCD or get treatment; making our situation very difficult. I have had to learn to become very creative in how I manage him and myself through our difficult and challenging circumstances. I have met some people with OCD at the annual OCD conferences that said they would be willing to visit my child. Some of these individuals with OCD were keynote speakers and some were just attendees at the conferences. So, there are people willing to make home visits to other states to try and connect with someone with severe OCD. I did not follow through with there offers, though I did have Dr. Michael Jenike make 2 home visits. My child was not receptive to those visits from Dr. Jenike and my child said that those visits set him back. Perhaps they did to some degree, (at least in his mind) but I also saw some significant changes in him after those visits. I will be speaking at this year’s conference in July in Atlanta and my audience will be for parents of children with OCD. If I can be of any help please let me know. Gwenne Gorman
Thanks for sharing, Gwenne, and in my experience as well, so many people are willing to help. I’m sorry things have been so difficult for you and your son, and I hope to hear you speak, as well as meet you, at the conference. I’m sure you have helped many parents by sharing your story and insights.
This is something that has been bothering me for awhile now. Where I’m from there are very few support groups that cater to OCD. Also, I had an incredibly difficult time finding a good therapist with a specialization in OCD. I have a family who isn’t very supportive of my recovery (because they can’t see it, it’s like it isn’t there.) and it would be incredibly helpful to be able to speak to people who actually understand about the potentially embarrassing and irrational obsessions and compulsions. I’m sure everyone with OCD has struggled to explain to someone without it that they know that what they are doing doesn’t make sense, but they feel compelled to do it anyways.
Anyway, I’m glad you’ve come out and spoke about this. In my opinion, OCD is one of the most misunderstood illnesses (even by therapists!) and it’s really difficult not to feel completely alone and freakish. I think OCD sufferers, myself included, would feel more comfortable telling their story if they felt like they weren’t the only one. I struggle checking, fear of hurting others and moral scrupulosity. Yet people still think OCD is all about putting all the books on your shelf in alphabetical order.
The stigma can be one of the most painful parts.
I really hope your dream is realized so that OCD gets taken more seriously….in order that OCD sufferers may feel safe talking about a highly misunderstood illness.
Thanks for sharing, staticcalm, and I totally agree, OCD is a highly misunderstood illness. Connecting with others who truly do understand what you are going through can be so powerful.
I cannot tell you how much I appreciate your blog! I hope to one day be as successful as you are in sharing what OCD is with others! Thank you for creating awareness.
Thanks for your kind words. I just checked out your blog and you are certainly on your way!
Plzzz help my son is 26 and has 3 adorable daughters that he is losing because of his ocd. He Is not able to work or carry on a relationship with his 3rd daughters mother. He used to be a great dad.
Sincerely a very sad mom
Hi Cody, Stories such as yours are truly heartbreaking and I will keep you and your family in my thoughts. If your son is willing to communicate with other OCD sufferers who have successfully undergone treatment you can fill out the Network To Recovery Form found on the tab on my blog.
hi janet, came across ur blog and m v encouraged by it .Can i ask if there is a support grp like this already available ? ie. someone who has recovered is available to talk to someone who is presently struggling ?
Yes, check out the OCD Network to Recovery tab above.
I suffered from this same problem and I still suffer from it, although with a lesser intensity. I always end up obsessing about whether I am using the correct the words. It will great to know the success stories of these OCD survivors. Do you have a resource where I could look at the success stories of OCD survivors.
Hi Vardhana, There are many success stories out there. You can start on the ADAA site here: http://www.adaa.org/living-with-anxiety/personal-stories, and there are many blogs and books about success in overcoming OCD. My book: http://www.amazon.com/Overcoming-OCD-A-Journey-Recovery/dp/1442239441 is one of them and I have many other resources listed in the book as well. There are also OCD support groups on Yahoo with many members who have beaten OCD as well. Good luck – you absolutely can recover from OCD!