Monthly Archives: September 2015

Tuesday Q&A: Rose Bretecher

Standard

Head shotEveryone with OCD has at least one thing in common, and I’ve met a few people with OCD over the years who I’ve really connected with. But I feel like I have a lot in common with Rose Bretecher, at least when it comes to our experiences with OCD. I’m not sure about the rest of our lives — she’s British, for one, and she’s met Jake Gyllenhaal. I haven’t crossed that one off my list yet.

Since I relate to so many of Rose’s obsessions, I applaud her especially for being open about them. It’s not easy to talk about pedophelia obsessions, or HOCD, or any taboo obsessions, but Rose lays it all out in her new book, PureThe subtitle asks, “Have you ever had an inappropriate thought?” Why, yes. Yes, I have. If you have, too, I hope you’ll check out her book as well as her courageous and eye-opening articles in The Guardian, Pure OCD: A rude awakening” and “A moment that changed me: Charlize Theron’s boobs, my boyfriend, and OCD.”

As painful as some of her obsessions were, she can laugh about them now — at least sometimes. Her attitude toward these taboo obsessions is refreshing and could go a long way toward destigmatizing the disorder.

You were diagnosed in your 20s after years of battling unsettling and unwanted obsessions. Why do you think it took so long for you to realize OCD was to blame for your intrusive thoughts?

Because OCD awareness is still very poor. If you’re experiencing disturbing sexual thoughts, and you have no idea that they’re a symptom of OCD, you’re likely to keep them quiet. And sufferers keeping quiet means that awareness remains poor. It’s a very self-defeating illness. Even when I was diagnosed it seemed so ridiculous that I struggled to believe it myself. I hope that kind of incredulity will change over time, as the full spectrum of OCD becomes more widely understood.

Somehow those of us with OCD can hide our torment from even those closest to us, especially when we struggle more with pure O than, say, hand-washing rituals. Were your friends and family members surprised to hear you’d been diagnosed with OCD? How did you tell them?

I’d told a couple of people a sugar-coated version of my story, but saying those things out loud proved extremely difficult. In the end I wrote about it for a UK newspaper, so my family and friends were reading about my experiences at the same time as hundreds of thousands of others. It wasn’t a very intimate way of doing it, but it was easier writing those words than saying them.

Although it took longer than you would have liked to get the proper diagnosis, somehow you were clued in to OCD and diagnosed yourself after conducting some Internet research. Unfortunately, your doctor recommended the wrong treatment first, which you said made your OCD worse. Tell us more. How did you ultimately find effective treatment?

I was prescribed psychodynamic therapy, which encourages a great deal of soul-searching and exploring your past to try and ease your current suffering. Unfortunately that only served to collude in my compulsive behavior — I’d been soul-searching for an answer to my identity for a decade and had only made myself worse. Sadly, I found effective treatment through trial and error over many years, and a lot of research — I knew what hadn’t worked in the past, so I knew what to avoid. In the end it was CBT with exposure and response prevention (ERP) therapy which saved me.

Cover

The title of your book, Pure, is perfect. Not only do you have pure O, but you might say some of your intrusive sexual thoughts aren’t exactly considered pure. In fact, they’re considered pretty taboo. How did you decide to disclose these very personal and painful thoughts in a memoir?

I just had this overwhelming feeling that this was a story that needed to be told in a very public way. It seemed scandalously unjust to me that so many people were experiencing this, yet no one felt able to talk about it. So I thought — screw it — let’s do this. If something bad happens, it’s not going to be as bad as a lifetime of keeping secrets. The thoughts themselves didn’t feel too personal, as by then I knew that they didn’t reflect my identity, and that they were being experienced by countless others out there.

You noted in one interview that when you struggled with the pedophilia obsessions you felt like you’d committed an unforgivable sin. How did you realize you had nothing to be sorry for? Was it as simple as being diagnosed with OCD and understanding it was the culprit, the “bad guy,” not you? Or did it take some time to forgive yourself for the thoughts — no matter how unwelcome they had been?

It’s strange. I’m 29 now. Those thoughts started 14 years ago and I think my brain has done a very good job of making me forget just how traumatic that time was. The cognitive knowledge I’ve learned has made me realize that thoughts are just thoughts which don’t necessarily reflect intent. Instead of forgiving myself, I learned that there was nothing to forgive.

You also struggled with another very common sexual obsession, homosexual OCD, or HOCD. How did this affect your relationships with men? Did you avoid dating at all during this time?

It had a disastrous effect on my relationships with men. I was terrified of commitment. I felt I couldn’t commit to anyone until I was 100% certain that it was the right thing to do. I had this recurring thought — what if I settle down and then years down the line I realize I’ve made a terrible mistake? Ultimately I had to accept that I can never be certain that that won’t happen, and jump in with both feet anyway.

unnamed

Your boyfriend is very understanding. So many single people with OCD are terrified they’ll never find love, and that someone who doesn’t have OCD couldn’t possibly understand — and I think this is particularly true when they have sexual obsessions. We worry that we’ll be perceived as some sort of sexual deviant. Do you have any advice for my readers who don’t know how to tell a mate what’s going on?

I was lucky with my boyfriend. He totally understands. We live in a very accepting social circle. My thoughts about homosexuality didn’t trouble me because I thought they were deviant, they troubled me because I desperately wanted certainty that I couldn’t get. Advice? I guess having a favorite OCD article or definition which you can place in someone’s hands is a good way of expressing what feels like the “unsayable.”

Do you still consider yourself to have OCD even though you’ve largely conquered it?

Yes. I’ll always have OCD, and I’ve made my peace with that. I’ve been through effective therapy and I know how to manage new obsessions when they arise.

If you could give just one piece of advice to someone else with OCD, what would it be?

Two pieces of advice, if I’m allowed. One: Be cautious whose advice you take. I realize the irony of this sentence as I type it, but OCD is a very complicated illness and non-expert opinions can often be unhelpful. Two: Get a course of ERP combined with CBT — it could turn your life around.

Advertisements

Tuesday Q&A: Clint Malarchuk

Standard

ClintCoachingWelcome to Tuesday Q&A! This week we’re hearing from Clint Malarchuk, a man who is supposed to be tough, who isn’t supposed to admit to feeling weak — but he’s shattered misconceptions and is speaking out, particularly about his struggle with OCD, to help others.

Clint is tough, by the way. And he’s really, really nice. Really. I introduced myself to him and his wife, Joanie — who’s also incredibly nice — at the OCD Conference in Boston. They were the keynote speakers, so I recognized them from their photo in the conference program — and then everything started to come together and I realized I’d heard of him before.

Maybe you have, too. Clint was an NHL goalie who made headlines and shocked TV viewers in 1989 when his carotid artery was slashed by St. Louis Blues player Steve Tuttle’s blade during an attempt at a goal. (I’ll spare you the link to the video–finding it is up to you.)

Clint is lucky to be alive, and he’s not likely to be forgotten anytime soon. But his legacy will last far beyond this one bizarre, life-threatening incident: He’s become an advocate for mental health awareness. He’s a voice for other men who aren’t comfortable talking about mental illness, and his story of survival — off the ice — serves as an inspiration for us all. He shares it all in his new book, A Matter of Inches: How I Survived in the Crease and Beyond

You’re a well-known guy, and as you mentioned in your keynote, it’s largely because you had a horrific accident on live TV. One cause of OCD is a traumatic event. Do you think this accident contributed to the onset of your OCD symptoms? What effect did it have on your day-to-day life?

Yes, the trauma really set my OCD off. I certainly already had OCD, though. As a kid I struggled a lot with germs and worrisome thoughts, usually about my mother’s health and safety. I went through different phases of OCD, and even some times where my OCD wasn’t seemingly there. After the accident, my OCD became so magnified: Intrusive thoughts, checking, worrying, along with severe depression. It was difficult to leave the house. This all seemed to worsen within months after the accident.

I was born and raised in Minnesota, and I often say I grew up at the hockey rink. I’ve always thought goalie would be the most stressful position on the team, with the pressure of guarding the net against that tiny puck, hearing the crowd gasp and then groan in unison if it gets through — not to mention the fear of it flying at you with sometimes incredible speed. Did having anxiety affect your performance as a goalie? Did being a goalie cause anxiety?

Being a goalie in the NHL is said to be the most stressful positions in sports. All factors considered, I’d have to agree. With stress comes anxiety. Leading up to games my anxiety would increase immensely. As a result, so would my OCD symptoms. After games I would have a small window of reprieve. Looking back, how I managed to play at the highest level is beyond me. OCD did help me with game preparation. The anxiety was at times unbearable before games. Thank God, once the game started, I was able to perform and the anxiety would leave.

ClintNetAlthough you were diagnosed with OCD fairly early on you managed to slip through the cracks of the treatment system a bit, getting refills on medication for 12 years without ever seeing a psychiatrist. Knowing what you know now, what would you have done differently following your diagnosis?

Not having to really check in with the team doctor was a big downfall for me. I thought as long as I took my medication I would be fine. I could just tell the doctor I need a prescription refill and that was it. Over the years my body got immune to the meds and I definitely got worse. I think it was so gradual that I didn’t realize how bad I was getting. Knowing what I know now, I would have educated myself better and seen a psychiatrist regularly.

You reached a point when you attempted to self-medicate with alcohol, which led to an addiction. Here you were dealing with OCD, PTSD, depression, and addiction. Life had become so unbearable you attempted suicide in 2008. We all have our own ideas of what rock bottom means, but that must have been yours. How did you move on from that moment?

Looking back on my life, I would say I hit more than one rock bottom. At certain times my OCD was so unbearable that I just wanted to die. In 2008, my attempted suicide was a result of one of those states of mind. The only difference is that this time I acted on it, and I am very lucky I didn’t die. I ended up getting the real professional help I desperately needed, but I hope others get help before reaching this sort of rock bottom. Acceptance is a huge word here! I had to accept how sick I was. I had to accept things and go forward and get well. I also had to believe that I could get well, and be happy. I had to accept that it would take accountability on my part. I had to do the work that was required on my side.

You weren’t exactly thrilled about checking into treatment, but your wife, Joanie, gave you no choice. What can you tell my readers who may be hesitant about getting the help they need, even if it means residential treatment?

Checking into a treatment center was where all this began. I was so scared, the fear was paralyzing. I did not want to be admitted into a facility. I was forced into it. My wife and the NHL team I was coaching for insisted on it. Well, thank God they did — it changed me. I got on the right medication, I got educated, I learned tools, and I got healthy. I was so extreme that I don’t know that outpatient therapy would have done the trick. It was life saving and life changing.

ClintandJoanieIt goes without saying that having OCD is hard for us. But it can also take a toll on our loved ones. Joanie stood by you through some of the darkest moments of your life, and it couldn’t have been easy for her. Do you have any advice for my readers whose family members have OCD?

OCD is torturous for us sufferers, but it really hits the whole family as well. When I went into treatment, it was a dual diagnosis facility. Meaning I had to work on my OCD and my self-medicating with alcohol. My wife, Joanie, went to a five-day family program. This was a big turning point for her and us as a couple. Our marriage was in shambles. It was there where she learned about me and my disorder. She was educated and advised. The other families shared their experiences dealing with their loved ones. The biggest thing for Joanie was understanding that I was sick, that the OCD was not who I am, but what I had. There was hope and support for her. Education for family members is crucial, as is counseling.

You’ve noted that men often feel uncomfortable discussing mental illness, that they think they need to be indestructible. As an athlete in one of the rougher sports you especially felt the pressure to remain stoic, but you’ve since written a book and have given several candid interviews. What was the turning point that convinced you to start talking about your struggles with mental illness? 

I think being open in my interviews and getting feedback from fellow sufferers really helped me realize that I was not alone in my struggles. My candidness helped other people, and men started reaching out to me as well. Surviving a suicide attempt, waking up out of a coma with a bullet in my head, really made me reflect: Why was I spared?Why was I successful in that I played in the NHL? Why did I have all these demons through my life? Well, I put it all together and figured the success gives me a platform to speak publicly. Conquering my demons gives me something to speak about, and help those still in the dark places, still struggling. The book was the hardest thing I’ve ever done, but it’s been the most gratifying as well. The emails and conversations from people who read it makes it all worthwhile. Playing goalie in the NHL, you have to be tough, both mentally and physically. Men see that and know I did it while struggling with OCD and other problems. I guess I’ve made it easier for them to admit they’re struggling too.TheCrazyGame

You’re doing well now. How do you stay on top of your symptoms and prevent relapse?

Today, I have to be accountable and do my part to stay healthy. I stay on top of my medication and doctor visits. I try to work out regularly. I meditate to keep balanced. I go to meetings. I support others and be of service to others. I’m grateful every day. I try not to take anything for granted. My wife and family mean everything to me, so I have to be healthy for them. They’ve seen me at my worst and I want to be there for them in every way I can.

If you could give just one piece of advice to others with OCD, what would it be?

You don’t have to suffer. It was a long, hard road for me getting well — today there is a lot more help for us. Get help. I know I couldn’t have gotten better by myself. The OCD Conference in Boston really encouraged me. We’ve come a long way in research, medication, therapy, and support. Never feel shame in being ill with something that’s not your fault. Have hope…because it’s real.

Tuesday Q&A: Lee Baer

Standard

IMG_3972 top pickIf you follow my blog or know anything about me at all — at least as far as my OCD story goes — you know how much I respect and admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad ThoughtsWhen I finally made an appointment with an OCD specialist and croaked out a few words like “bad thoughts” and “no one will love me if they know,” the psychiatrist recommended The Imp of the Mind. “It could fit in my front pocket,” he said, patting his shirtfront, “but it’s packed with good information.” (By the way, that’s only true if you have unusually large pockets, because the book isn’t that small.)

That “little” book saved me. After having silently suffered with taboo obsessions for years and years, I learned that I wasn’t actually alone — I wasn’t the only person who’d had thoughts like I’d had, and they were nice, relatively normal people, too.

Nine years later, Lee and I are collaborating on a peer-to-peer support program (stay tuned!), and we presented together at the OCD Conference in Boston in August. What a rush! As I tearfully told everyone in the audience, I was up there with my hero.

Now you have the benefit of hearing directly from him — sorry, these are all my questions, but I tried to ask what you’d want to yourself if you had the chance. Thanks, Lee!

When I was struggling the most with my taboo obsessions I was actually worried that getting better would be a negative thing. I thought, “What kind of person would I be if these terrible thoughts didn’t bother me?” and I thought the distress is what kept me from acting on them. What would you tell someone with similar fears?

This is very common: OCD is very tricky so it puts sufferers of taboo thoughts in a “damned if you do, damned if you don’t” dilemma. It is very important to recognize that the OCD is trying to make you think like this and not be fooled. CBT and/or medications will not make you any less empathetic to terrible things that happen in the real world–instead, they will keep you from over-reacting to “what-if” scenarios that OCD conjures up in your mind.

What made you decide to treat OCD?

I have specialized in treating patients with OCD and related problems since about 1985, when Drs. Jenike, Minichiello, and I established one of the first OCD treatment and research programs in the country at Massachusetts General Hospital, because we were fascinated by this disorder, in which otherwise highly intelligent people experienced thoughts and rituals that they were unable to control. Also, at that time, OCD was considered to be resistant to existing treatments so we saw solving this problem as both a challenge and an opportunity to make a real difference in people’s lives.

ImpoftheMind

I recommend The Imp of the Mind all the time. As you know, it was one of the first things my psychiatrist prescribed the day he diagnosed me with OCD, and just knowing I wasn’t the only person with taboo obsessions like mine helped tremendously. Why did you focus on this type of OCD?

The idea for this book developed soon after we founded the OCD Institute residential treatment program at McLean Hospital in 1997. In the course of running several groups in this program, I noticed that patients with taboo obsessions felt ashamed to discuss their problems in group settings with other OCD sufferers with problems like excessive hand-washing or checking doors or electric plugs. When I asked why, these sufferers of taboo obsessions told me they felt that the other patients’ problems–although very troubling–did not have a moral component and did cause one to question if he or she was truly evil. They worried that these other patients — although they also had OCD — would not understand their taboo obsessions and think they, in fact, wanted to do the terrible things they imagined. To address this problem, I began a separate evening group for individuals with taboo obsessions, and found that the participants experienced great relief in being able to share their experiences with others who had similar problems. It was through running this group that I recognized the need for a book on this topic to reach others who were suffering in private. And it was through my experience with these groups over several years that I learned much of what I know about these taboo obsessions.

In The Imp of the Mind you share an example from White Bears and Other Unwanted Thoughts by Dr. Daniel Wegner. The basic idea is that if you tell someone they’re forbidden from having a certain thought — in this case, picturing a white bear — they’ll be even more likely to have the thought. In fact, the thought becomes stronger the more they try to rid it from their mind. How can someone with taboo intrusive thoughts overcome the urge to push the obsessions out of their minds as quickly as possible? The thought of murdering a loved one is so painful it’s a natural response to recoil at it.

Dr. Wegner’s book explains one key reason for the “stickiness” of taboo obsessions in a very easy-to-understand way. Dr. Wegner and I often discussed this topic, both before and after he joined the Harvard College faculty, and I was saddened by his untimely passing two years ago. We agreed that the first step for sufferers of taboo obsessions was for them to understand that thoughts passing through our minds are not as important as we often believe them to be. Everyone has thoughts they don’t like having at times, but the very universal nature of these thoughts proves that they are not dangerous — if this were not the case, violent and sexual attacks would be occurring daily in every home and office! Taking this leap of faith is often the first step in successful treatment. Secondly, sufferers have to understand that OCD is “tricky” and it will try to get you to fight the obsessions, giving them strength, through the mechanism of “thought suppression” that Dr. Wegner researched so thoroughly. Truly understanding these two concepts often reduces the OCD sufferers’ suffering instantly.

People with taboo obsessions are terrified they’ll act on their thoughts. They think the thoughts must mean something; otherwise they wouldn’t have them. Without giving in to our compulsion to be reassured, what can you tell us about the likelihood of people with OCD acting on their obsessions?

Although I tell my patients (only once, mind you!) that based on my experience, and the experience of my colleagues who treat OCD, they will not act on their violent or sexual obsessions. However, I also know that this will not really work to reassure them, because OCD preys on doubt and tries to get them to find absolute, 100 percent certainty. Yet there is no absolute certainty about anything in the future — even about the sun rising tomorrow — so the solution is to learn to live with the feelings of uncertainty, even of things that are extremely unlikely.

Why do you recommend ERP to patients with OCD?

I tell my patients that we all have a “rational brain” and an “emotional brain.” Their rational brain can understand that their taboo obsessions are not meaningful, and they need to learn to let these obsessions pass without fighting them, while their emotional mind can continue to react with strong, uncomfortable feelings to these thoughts. The most effective, non-drug treatment we have for reducing or eliminating this reaction of their emotional mind is through exposure and response prevention. I describe this process in detail in my book Getting Control.

getting-control-overcoming-your-obsessions-and-compulsions-lee-baer

Many people with “pure O,” that is, mostly obsessions coupled with mental compulsions, wonder how ERP will work for them. You can’t have advise them to touch a toilet seat and then resist the compulsion to wash their hands, for example. Let’s say someone with pedophilia OCD comes to you. How might you go about exposures?

I’d first help them to identify situations that they are avoiding due to their obsessions. Next I would have them gradually go into these situations while learning to tolerate the discomfort and obsessions that come while doing it. This is called in-vivo, or real-life, exposure and response prevention, and I always try to begin with this if possible. We’d also probably prepare a worst-case scenario of their worst fear coming true for them to record and listen to at home until their discomfort goes down without ritualizing. This is called imaginal exposure and response prevention.

What advice do you have for folks who live in rural areas or far from quality care?

I would definitely suggest they start by joining the International OCD Foundation (IOCDF) and, if there is one, their local chapter. This will provide them a wealth of support and information about support groups and providers in their area, as well as the annual meetings for sufferers and their families to learn about treatment for OCD.

You and I have been working on a peer support program — our goal is to match folks who have taboo obsessions with people who have had similar obsessions and have been some progress toward recovery. What are the benefits of such support?

My experience has always been that it benefits both individuals greatly: I have yet to have a patient get better from their taboo obsessions who is not excited about the idea of having the chance to give back to another sufferer at an earlier stage of dealing with this disorder (probably because they remember how hard it was at the beginning for them). And for my new patients, hearing from someone with similar symptoms who has gotten better gives them hope, and also lets them feel comfortable sharing some of their most private fears, often for the first time.

If you could give just one piece of advice to people, what would it be?

Try and find someone you trust to talk with about your obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.

Tuesday Q&A: Janet Singer

Standard

Happy Tuesday! I’m pleased to host a fellow blogger and author today, Janet Singer of OCDTalk. Janet is a tireless advocate for the proper treatment for OCD — and she doesn’t even have the disorder herself. After watching her son suffer through many missteps of treatment, Janet dedicated herself to spreading awareness about OCD and how to best treat it, namely, exposure and response prevention (ERP) therapy.

Janet’s first book, Overcoming OCD: A Journey to Recovery, came out earlier this year. A gripping and sometimes heartbreaking read, it is a memoir of her family’s experience with treatment — medication, “talk therapy,” and residential treatment. You can read my review, but first let’s chat with Janet.

OvercomingOCDYou’ve been blogging about your experience as a parent of a child with OCD, and you also wrote a book, Overcoming OCD. So far it’s not something your son has shared as openly as you have. What did he think when you told him you wanted to start a blog, as well as contribute to existing blogs, in order to help others like him get the proper treatment sooner?

You are absolutely right that my son doesn’t like to talk about his experiences with OCD, though he doesn’t hide it from his friends. I actually asked his permission to blog and work on a book, as I didn’t want to become involved in anything that would make him uncomfortable. He saw how passionate I was and realized how helpful our family’s story could be, so he was fine with it. His only request was that I use pseudonyms for our family.

You could have easily receded into the background after Dan triumphed over OCD, but you have been tireless in your efforts to spread awareness about this often misunderstood disorder. Tell us why.

What initially propelled me forward was the fact that ERP therapy is not well known or widely used to treat those with OCD, even though it is the first-line psychological treatment approach as recommended by the American Psychological Association. It was so unacceptable to me that I decided I would spread the word myself! My advocacy efforts widened and evolved quickly, and now I talk about anything and everything related to OCD. But spreading the word about ERP, and letting people know that OCD, no matter now severe, is treatable, is what got me going, so to speak.

Was writing a book about your family’s experience always a goal, or did it become apparent that it was something you needed to do as you advocated more and more in the OCD community?

It was always a goal of mine, even before we had our “happy ending” as I honestly felt our story could be helpful to so many people. I did put it on the back burner for a while as I was so busy and involved with my blog, but I knew at some point, I needed to write that book.

How did you first realize Dan needed help? Did he have obvious compulsions, or did he come to you to tell you about his symptoms? 

We first realized Dan needed help when he came to me and my husband and said, “I have OCD. I need help.” Seriously, we had no clue, even though he was 17 and still living at home at the time. He diagnosed himself with the help of the Internet. Because his compulsions were mostly mental, it was easy for him to hide them. Of course in hindsight, we now know there were signs.

When he was first diagnosed, what treatment did he seek?

His long-time pediatrician gave him 10 mg of Prozac and suggested he see a therapist. So off he went to the local psychologist in town, who told us he treated OCD. He used “talk therapy” with Dan, and told us his OCD was “no big deal.” Sigh. So many mistakes were made!

Janet, I read your book, and let me tell you, it was heartbreaking at times. You watched your son deteriorate before your eyes, and you and your family put all the hope you had left in a residential treatment program. Dan’s treatment didn’t go as planned, however. You began to worry that he was too attached to the program and wasn’t learning how to re-enter the real world, particularly the college he’d worked so hard to get into. What do you think should have happened differently?

My main complaint about the residential treatment program is that my husband and I felt deliberately shut out of all aspects of Dan’s care while he was there. While we understand that we didn’t need to know the specific details of his OCD or even his ERP therapy, we absolutely should have been involved in decision-making that would potentially affect his life’s goals and his dreams. There is no question the treatment center knew how to treat OCD. But they didn’t know our son. They saw Dan in the worst shape of his life, so of course they couldn’t really know him as a person — his values, hopes, dreams, goals. We naively thought we would be encouraged to collaborate with the treatment providers to figure out the best ways to help Dan. That never happened.

I know many people need residential treatment, and it’s possible to thrive after completion. Do you have advice for individuals who may be entering such a program, or for their parents, so that they get the most out of it?

For parents, I would recommend asking questions before your child even attends. Make sure you feel comfortable with your expected level of involvement in your child’s treatment, and make sure to speak up if you feel you are not being heard. So many parents feel intimidated by “the experts” and just defer to whatever they recommend. I think this is a big mistake. Nobody knows your child, or cares about your child, as much as you do, and your thoughts, opinions, and feelings should absolutely be taken into account. I don’t have OCD so it’s hard for me to advise someone who is entering a program, but I do know how important it is to commit yourself fully to the intensive treatment. It’s scary, but in the end, so worth it.

Another roadblock on Dan’s path to recovery was overmedication. At one point he was diagnosed with ADHD, an analysis you completely disagreed with, and he was medicated for that, as well. How can a person with OCD empower oneself to take treatment one step at a time in order to avoid a situation similar to Dan’s?

That’s a great question, Alison, and I’m not sure I’ve got a good answer. I could say “educate yourself,”  or “research different meds,” etc. but Dan was in no condition to do any of that himself. He was doing so poorly at the time,  and was happy to take a new drug that “might” help him. And he trusted his doctors. And because his OCD was still so intense, he often wasn’t thinking clearly. Though I don’t have a good answer to your question, it brings up the importance of having loved ones advocating for those with OCD when things are really bad.

It seems that Dan hit rock bottom at a particularly awkward time — he was 19, so he wasn’t a child anymore, but he also wasn’t a fully independent, mature adult who knew how to navigate the mental health care system on his own. How did you and your husband overcome some of the hurdles you faced in this parental gray area?

You are absolutely right that his age complicated things. Because he was over 18, his doctors couldn’t tell us anything without his permission. Dan was happy to include us in everything, so this was really only a problem at the residential treatment center, when the staff did not communicate with us. I think his age was more of an issue for us as parents. We tried to treat him like a “normal” 19-year-old, but how do you do that when your child is barely functioning? As he got better, we had to let go more and more, even though it was scary for us as parents. It was a constant balancing act. I forced myself to put some of my worries aside so that Dan could move forward toward a life of independence. I reminded myself that while it would have been easier for me to just keep Dan close to home and monitor his every move, it really wasn’t what was best for him.

That brings up a common issue in treating OCD. Oftentimes the best way to help a person with OCD is to not help, meaning we shouldn’t enable him or offer too much reassurance. How did you make sure you were helping Dan find the right treatment without defaulting to what probably felt natural as a mother — comforting him, reassuring him, doing whatever it took to ease his distress?

Great question. When I first found out he had OCD, I comforted and reassured him all the time because, as you say, that’s what mothers do. Looking back, it’s amazing to me that none of Dan’s treatment providers ever explained to us that accommodating Dan only strengthened his OCD. That’s something we learned through our own reading, etc. Families need to be educated! Honestly, once we understood how and why reassurance fuels the fire of OCD, it was easy to stop because we knew it was best for Dan. Also, Dan would actually tell us when we were inadvertently enabling him, as he wanted to get well so badly. As we worked toward finding the right treatment, and went through so many ups and downs, I’m sure we enabled him at times without realizing it…it was a definite learning process — doing the “opposite” of what your instincts tell you isn’t easy!

How is Dan doing now?

Thankfully, Dan continues to do well. He is 26, working in his chosen field, and living with his girlfriend. And he’s happy. What more could I ask for?

If you could give just one piece of advice to someone with OCD, what would it be?

Don’t wait one more day to get the right help. OCD is treatable! I have never met anyone who has regretted doing ERP therapy. The only regret I hear is for not having done it sooner.