Posts tagged ‘OCD advocacy’
It seems to me that OCD has become the mental illness du jour. Every day new celebrities announces they have the disorder and it seems to be popping up on prime time television shows as well. After all, it does make for good TV with lots of “interesting” rituals to focus on. Obsessive-compulsive disorder is being talked about more than ever.
While I believe the attention given to OCD is mostly a good thing, I feel that the disorder is still very much misunderstood. The general public isn’t getting it, and I’ve been wondering why. Is it just the misrepresentation of the disorder, or is it more?
I thought back to when my son Dan first told me he had OCD. I knew as much about it at the time as most people who had no direct experience with it. As I’ve shamefully admitted before, my initial response was, “Really? But you never even wash your hands!”
Aha. What I was focusing on, and what I think those who know little about OCD pay attention to, are the “compulsions” part of the disorder. In many cases, this is the concrete part of OCD; the stuff you can actually see. (I say “in many cases,” because sometimes, as in Dan’s OCD, compulsions are not visible. This is sometimes referred to as Pure O.) Washing hands, picking up twigs, tapping the wall, checking the stove, flicking the light switch on and off. This is where OCD gets its “cute and quirky” reputation, from these observable compulsions. So an outsider looking in might think,”Sure, it stinks that he has to check his stove twenty times before he leaves the house, but it’s not really a big deal.”
Of course, those of us who know more about OCD realize these noticeable compulsions are only part of the story. It is the obsessions, the crippling fears that drive those with OCD to perform compulsions, that are the source of their suffering. The torment that those with OCD feel varies but it can be so bad that it has the potential to totally disable them. And while we can educate people about obsessions and even give them lists of common ones, you still can’t see them. If you have a loved one with OCD or are a professional who works with OCD sufferers, then you have likely witnessed the devastating effects of the disorder. The general public has not, as those with OCD are adept at hiding their pain.
As we continue to advocate for OCD awareness, I think it’s our responsibility to differentiate between what OCD really is as opposed to the preconceived notions of the general public. Only then can we hope to enlighten others who might then think twice about saying “I’m so OCD.“
In a recent post, I talked about two of the more common roadblocks for those seeking treatment for OCD: a shortage of qualified OCD treatment providers and adequate healthcare coverage.
If you are fortunate to live near a large research university, you might be lucky enough to circumvent these two obstacles, as there just might be studies taking place that could provide treatment for obsessive-compulsive disorder at little to no cost. One such research study is now ongoing at the Pediatric Anxiety and Mood Research Clinic at Columbia University/New York State Psychiatric Institute.This is a clinical trial assessing the efficacy of an FDA-approved antibiotic (minocycline) for OCD sufferers between the ages of eight and twenty. It is an exciting study as preliminary results appear promising. Minocycline has fewer side effects than SSRI’s, is lower in cost, and has been used safely for years, mainly for the treatment of acne. Those participating in this study also receive free Cognitive Behavioral Therapy and are offered three months of follow-up care at no cost. Some participants might also be eligible for CBT and/or medication management outside of the study. For all eligibility and contact information, and to learn more about the study, click here.
Again, there are those who are working tirelessly to make life better for OCD sufferers and their families. As we enter this week of Thanksgiving, I am indeed thankful for all the professionals who have dedicated their lives to helping those with OCD. I am thankful to all of you who share your stories in the hopes of educating others and raising awareness of the disorder. I am thankful that my son Dan continues to do well. And I am thankful for my whole family, who have never once complained about the hours I spend at the computer advocating for those with OCD. I am indeed blessed.
Wishing you and your loved ones a happy Thanksgiving surrounded by those you love.
I have been fortunate to share the story of my son Dan’s recovery from severe OCD with so many OCD sufferers and their loved ones. The fact that he is doing so well is concrete evidence that OCD, no matter how severe, is indeed treatable, and it is gratifying to know that people have found hope through our story.
When I connect with those who have either read about Dan’s story or heard me speak about him the first question they often ask is “How is Dan now?”
I am so incredibly thankful that the answer continues to be, “He is doing very well.”
The next question is usually something like, “Where is he? How come we never see him at these conferences/meetings/or other OCD events?”
More than a year ago I wrote a post discussing whether “OCD advocacy” should be a responsibility of those who have recovered from severe OCD. Better than my post, I believe, are the comments from those who pointed out that advocacy comes in many ways, shapes, and forms. By continuing to do well, keeping his OCD at bay, and living his life to the fullest, Dan is giving hope to all those who suffer from OCD.
Maybe my son’s choice to not focus on his OCD any more than he needs to is one of the reasons he has learned to cope so well. As I have heard many OCD sufferers say, “OCD is something that I have, not something that I am.” Dan has made a conscious effort to put his OCD on the back burner and focus wholeheartedly on living his life to the fullest. He has fought his way back from the brink of despair, and perhaps this fact fuels his resolve to leave OCD out of his life as much as he can.
But I’m not fooling myself. I know at some point Dan might not have a choice. While he might go years with mild obsessive-compulsive disorder, there’s still a chance it could flare up, at any time, with a vengeance. It could overtake him again. The bottom line is I don’t know what the future holds, and neither does Dan. Uncertainty. The word that those with OCD (and many of us without the disorder) hate. Nobody knows what will be.
For now, however, I will revel in the fact that Dan is doing well. I will continue to advocate for OCD awareness and proper treatment, and I will respect his decision to not want to make OCD a focal point of his life. Because after all, isn’t that the whole idea?
Today is World Mental Health Day, and I’m pleased to be participating once again in the World Mental Health Day Blog Party. I’ve been “partying” since the beginning, and you can read my 2011 and 2012 posts if you’re interested.
The theme of World Mental Health Day, 2013 is “Mental health and older adults”. Since I blog about obsessive-compulsive disorder, I naturally figured I’d write about OCD in older adults. I’ve been sitting here at the computer for a while, pondering the issue and doing a little research, and I realize I know little to nothing about OCD in the elderly. Furthermore, I haven’t been able to find any studies, articles, or facts to enlighten me. There’s plenty of information available on OCD in children, teens, young adults, and even adults. But then it stops. What about OCD in older adults?
A few thoughts come to mind. Maybe OCD wanes as the senior years approach and the disorder is seldom an issue? Or better yet, it rarely exists? They’re nice thoughts, and I’d like to think they’re true. Or maybe OCD can become so tangled up in other illnesses such as dementia or Alzheimer’s Disease that it goes unnoticed and undiagnosed? Which brings up other questions. How common is it to develop OCD in old age? Or is it more likely that seniors with OCD have been suffering from the disorder for many years? Is ERP therapy and/or medication helpful for the elderly? I could go on and on with the questions. I just don’t have the answers.
Unless I’m missing a plethora of information out there, I don’t like what this says about us, as a society. The elderly aren’t as important as the rest of us. Why study a group of people who are nearing the end of their lives?
That question I have the answer to. Because we might be able to help them and improve the quality of their lives. Because any research on OCD just might benefit everyone who has the disorder. Because “the elderly” are our mothers, fathers, grandparents, friends, and neighbors. Because one day, if we live long enough, we will be them.
I’d love to hear from anyone who is able to share some insight on OCD in older adults.
My next post will appear the week of October 21, after I return from the OCD Texas Conference. Have a good week, everyone!
Many children are either already back at school or heading back this week, so I’d like to share this post I just wrote for Beyond OCD:
Last year at this time I wrote a post about Taking OCD to College. It focused on establishing a good support system for OCD sufferers who are embarking on this exciting, but often anxiety-provoking journey. I discussed how important communication is with all school personnel, from the Dean of Students to teachers. The more support the better.
But what happens when the support you deserve, and are entitled to, is not afforded you? What if one of your teachers thinks OCD is no big deal, or not a real illness? How do you deal with a situation like that?
My son Dan, in his senior year of college, was discriminated against because of his OCD. I know discriminate is a strong word, but it fits. According to the Americans with Disabilities Act (ADA), college students with documented disabilities are entitled to reasonable accommodations. While offering wheelchair ramps for those who can’t walk is an obvious compliance, accommodations for other issues, such as OCD, are not as clear-cut. Unfortunately, there are still many college professionals who know little, or have misconceptions, about obsessive-compulsive disorder. Students themselves might not know what they need until after the fact. Indeed, the complexity of the disorder can make the establishment of accommodations difficult. The Academic Resource Coordinator at Dan’s school, the expert who dealt with students with disabilities, “wasn’t sure” if Dan’s issue of concentrating more on details than the big picture was related to his OCD.
The best advice I can offer if you find yourself in a similar situation is to know your rights. Read up on the ADA and stand firm. Support, as well as documentation in writing, from a therapist or psychiatrist (preferably your own), can be invaluable. While college is typically a time of reduced parental involvement, I am convinced that if my husband and I hadn’t joined in Dan’s fight, the outcome would not have been in his favor. We had to bring our son’s case all the way to the president of his college, but he ultimately got what he deserved: fair treatment.
Because Dan’s OCD wasn’t diagnosed until he was seventeen (and because we homeschooled), our family never dealt with the need for accommodations during the K-12 school years. Again it’s important to know your rights and options. Laws and plans are in place, particularly for schools that receive federal funding (this includes all public schools). Beyond OCD’s site, OCD Education Station, is an excellent resource, not only for this information, but for all concerns about dealing with OCD in school. Again, there are still many school professionals who do not understand OCD, and this is just one of the many reasons why parents need to be well prepared to advocate for their child.
Whether you’re sending your child off to kindergarten or college, this exciting time can also be stressful. Add obsessive-compulsive disorder to the equation and chances are you’re also adding an extra layer of anxiety. That’s understandable. I do think, however, that it’s important for parents to remain positive and convey an air of confidence that everything will work out just fine. Because it probably will. But if problems do arise, we need to let our children know, no matter what their age is, that we will be there to support them, advocate for them, and love them every step of the way as they navigate their educational journey.
The 20th Annual OCD Conference begins in Atlanta today. I’m not able to attend this year for a number of reasons, but want to wish all of you who are going a wonderful time! The talks, workshops, and programs listed look amazing, and if the conference is half as good as last year’s, it will be a real success. I’m disappointed to be missing out on what is sure to be an informative as well as enjoyable time, and I’d love to hear all about it, either through your own blogs, comments on my blog, or email.
Have a great trip!
Is it just me, or does life sometimes seem like a series of decisions? Should I do this, go there, buy that? Many of our daily decisions are made with little to no thought given to them, and are unlikely to have a major impact on our lives. Then there are the major decisions, which deserve more attention and involve more deliberation. We have to weigh the pros and cons, the benefits and the risks, and then make a choice. Or maybe it all just becomes so overwhelming that we put the decision off until later or, in some cases, forever.
One of the most important decisions I’ve made over the past few years is starting this blog. I truly agonized over it. Who am I to write about OCD? I don’t even have the disorder! What could I contribute that would possibly be of any value? I’m no expert. All I have are my own thoughts and experiences to share. People will laugh, or even worse, criticize me. They’ll get angry. Of course, I could go on and on. I had no shortage of reasons why I shouldn’t blog about obsessive-compulsive disorder.
But even with all my misgivings, I took the plunge. I had to give it a try. I owed it to myself and my son to try to find some meaning in his suffering from severe OCD. The results have gone way beyond my wildest dreams and in retrospect, my concerns about my “credentials” almost seem ludicrous. Being an expert is not what it’s about. My main goal, from the very beginning, has been to share our story so that others will find hope, and to spread the word that OCD, no matter how severe, is treatable.
Which brings me to the purpose of this post. I’ve written before about OCD and decision making, about how doubt is the cornerstone of OCD and how those with the disorder often struggle with making choices. But there is one decision, in my opinion, that all those with OCD need to make, and that is to get proper treatment. Maybe you’ve been mulling it over, considering it from all angles, and procrastinating. Maybe you feel you aren’t motivated enough, or it’s too scary. There’s so much to consider.
But really, there’s not. I have never heard anyone regret undergoing proper therapy for OCD, which includes Exposure and Response Prevention (ERP) Therapy. Indeed, most people say they wish they had done it sooner. Yes, decisions can be hard, but sometimes the most difficult ones bring us the greatest rewards. So if you haven’t already, please take the plunge. It might just be the most important decision of your life.
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!