Posts tagged ‘OCD advocacy’
The Brain & Behavior Research Foundation is a New York-based nonprofit organization that has awarded nearly $300 million in mental illness research grants since 1987 to scientists around the world. They are “committed to alleviating the suffering caused by mental illness,” and offer free webinars, information resources and activities to the public.
I’ve recently been asked by a representative of this foundation to spread the word about an upcoming free webinar about OCD. This webinar is part of their Tuesday series that features leading mental health researchers presenting the latest in new technologies, diagnostic tools, early intervention strategies and next generation therapies for mental illness. I am happy to help spread the word:
The following webinar will be presented on Tuesday, May 14, 2013, 2:00 p.m.-3:00 p.m. ET:
If you have the opportunity to listen to this presentation, I’d love to hear your thoughts about it!
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.
For anyone who is interested…
Here’s the link to my latest post on Beyond OCD’s Connections Blog:
For a long time I thought it was us. I even wrote a post a while back where I analyzed interactions and speculated on the possible rationale behind our strained relationships with the staff at our son’s residential treatment program. We must have come on too strong, we were in a weakened state, we had some personality conflicts.
I no longer believe any of the above. I have connected with too many parents who share similar stories. Accounts of being ignored, disrespected, even blamed. Especially when dealing with intensive residential treatment programs for obsessive-compulsive disorder.
Often the discord seems to emerge when parents try to advocate for their children. Not antagonistically, but passionately. Because as I’ve said before, while the staff there know how to treat OCD, they don’t really know the person they are treating. Teenagers or young adults entering one of these programs might very well be in the worst condition of their lives. To an outsider they appear to be little more than their OCD. The people who really know these OCD sufferers best are, in most cases, their parents. Parents know the essence of their children: their beliefs, hopes, dreams. What makes them them. At the time Dan entered his intensive residential program, my husband and I knew him better than anyone else did, even more than he knew himself.
It still boggles my mind that we were not welcomed with open arms and treated as an essential resource toward Dan’s recovery. Yes, we asked questions. Not about the details of Dan’s OCD, but about how we could best help our son. Yes, we wanted explanations when something was confusing to us or didn’t seem right. Yes, we brought up the side effects of his medications. What parent wouldn’t do these things? Yet we were seen as overbearing and intrusive, and this is the story I hear over and over from other parents. Even when HIPPAA Privacy Rules have been waived, professionals at these programs are often reluctant to include parents in any aspect of their patient’s care. While my experience and the stories I’ve heard revolve around parents whose children are in residential programs, I wonder if the same issues arise when dealing with, let’s say, a spouse, parent, or other loved one who is in an intensive treatment program.
You might think this is all so upsetting to me because, let’s face it, nobody likes to be treated this way. But that’s not the reason. This treatment troubles me deeply because it only adds to the suffering of our children. In our case, Dan quickly picked up on the tension between us and the staff, and this added to his own stress. Not what he needed. How great it would have been if the two parties who wanted to help him could have worked together toward his recovery. Surely we would have all benefited from this collaboration, especially Dan. And wasn’t it all supposed to be about him anyway?
I tend to write about obsessive-compulsive disorder from a parent’s viewpoint because, well, I’m a parent whose son has OCD. My friend Abigail over at unreasonably rational sees things from the reverse perspective, and we recently chatted about how young adult (and even “older” adult) children with OCD can help their parents understand what is going on with them. Our conclusion? It’s not easy.
Every parent-child relationship is unique, with its own set of issues. Even in the best of relationships, parents will likely “mess up” and say or do the wrong things at times. I still cringe every time I think of the first thing I said to Dan when he told me he had OCD: “Are you sure, Dan? You never even wash your hands.” Pretty unbelievable, huh?
This comment, I’m sure, only solidified what Dan already suspected. His mother needed help. It was important that I become educated about OCD. So he handed me a book to read (not my favorite so I won’t endorse it here) which gave me an inkling of what he was experiencing. It was a smart move on his part, and one I’d recommend to adult children who want to help their parents understand their OCD. Educate them any way you can. Give them a book, point them to a website, have a conversation.
I know, that last one is tough. I suggest talking with parents during a calm, uneventful time, preferably when everyone is in a good mood. You might begin by telling them how much you appreciate their support and love (assuming you are getting that from them), and then bring up the issues you feel need addressing. Maybe they have preconceived notions about OCD that just aren’t true. Maybe they are saying things, or acting in ways that are hurtful to you. I know I always appreciated it when Dan “set me straight” or voiced his opinions. He was able to help me see things from his viewpoint, which is not always easy for parents to do. I wish he had spoken up even more.
I don’t believe I’m alone in saying that one of the strongest emotions felt by parents when they find out their child has mental health problems is guilt. Somehow it is our fault. Whether this is true or not isn’t even important; we believe it. I think guilt has the potential to work both ways. In some cases, it might make the issues harder to talk about, as parents would rather sweep it all under the rug and just pretend everything is fine. In other situations, feelings of blame might spur a desire to really understand what you think you’ve done to your child, so you can hopefully remedy it.
Of course, sometimes a conversation with parents, for so many different reasons, is just not going to happen. Maybe it’s too hard for you to talk about your OCD. Or maybe you are not on speaking terms, are dealing with a strained relationship, or just don’t see eye to eye. In these cases, maybe it’s best to just agree to disagree. The only behaviors any of us can change are our own, and those with OCD need a lot of strength to work toward recovery. I believe expending energy trying to change others rarely, if ever, works.
All of us, especially those who are suffering, just want to be heard, understood, and accepted by those we love the most. If you are not getting what you need from your parents, hopefully other family members, friends, and loved ones can fill the void. Support from those who care about you will surely help as you move forward in your fight against obsessive-compulsive disorder.
At the October 2012 annual meeting of the American Academy of Child and Adolescent Psychiatry, Tara S. Peris, PhD, reported on the preliminary success of PFIT (positive family interaction therapy) when used in conjunction with standard CBT (cognitive-behavioral therapy) for those with a primary diagnosis of treatment-resistant pediatric OCD. Families in the study also had an assessment of poor family functioning. I recommend reading more about this study, which also talks about the criteria used to identify dysfunctional families.
All I can say is, “Yay!” If you’ve been reading my blog for a while, then you probably know I am a big proponent of family involvement in therapy. When children have obsessive-compulsive disorder, it is crucial that their parents, indeed their whole families, understand the disorder, and learn the proper ways to interact and respond to the OCD sufferer. When Dan first told me he had OCD, I followed my mother’s instincts, and did whatever I could do reduce his anxiety at the time. I had no idea I was enabling him and contributing to the strength of his disorder, because I had little to no understanding of how OCD operates. I needed to become educated. I have no doubt my entire family would have benefited from PFIT.
In regards to the study, I find it interesting that dysfunctional families were singled out, as I think it would be difficult to find a family who isn’t dysfunctional when dealing with severe OCD. I’ve written about how important it is for health professionals to realize they are dealing with families in a weakened state. Not only were my husband and I confused and distressed by what was happening to our son, we were also terrified. It’s hard not to be dysfunctional when your child spends entire days just laying on the floor, doing absolutely nothing.
I think PFIT is definitely a step in the right direction, but I would like to see it made available to all families and loved ones of those who suffer from obsessive-compulsive disorder. While this study does not include children with mild to moderate OCD, or families who are not classified as dysfunctional, I believe every family who has a loved one with OCD could benefit from learning how to deal with the disorder, as well as with each other. It sure couldn’t hurt.