Tag Archives: medication

Tuesday Q&A: Michael Jenike

Standard

IMG_2367[1]In 2014 I attended my first OCD Conference, and I kept hearing snippets of conversation about this man, Dr. Michael Jenike. It was “Jenike this” and “Jenike that.” I finally asked my hotel roommate who Jenike was. “You haven’t met Jenike?!”

In 2013 Dr. Jenike had granted me permission to use his very helpful checklist for finding an effective therapist in my book, so when I met him at the 2015 conference, I thanked him. After all I had heard about him, I thought he’d have an intimidating, scholarly presence. Nope. Not so much. He said, “Where’s my cut of the royalties?”

Dr. Jenike is brilliant, yes, and he’s helped countless people gain control over OCD. But he’s really goofy, too. Going to this year’s conference in Chicago? See for yourself.

You’re kind of a big deal in the OCD community. You founded the Obsessive-Compulsive Disorder Institute (OCDI) at McLean Hospital, a world-renowned residential treatment program. How did that all come about?

After treating thousands of patients for a number of years, we realized that some patients did not improve despite medications and behavior therapy. I thought that perhaps a residential OCD facility where patients could stay for long periods of time might make a difference. We planned to do the same treatments, just for a longer period of time and more intensely. McLean OCD Institute has now been open around 20 years and the demand for services has not let up.

When you decided to go into psychiatry, did you know you’d end up treating OCD? If not, when and how did you decide to focus on this particular disorder?

I had no idea about OCD. In medical school I had a classmate who would miss many classes because he was in the bathroom washing his hands. I had no idea why he was doing that. I was going to be a surgeon and planned on going to Johns Hopkins for surgery. In medical school I had an inspiring teacher, Dr. Ronald Krug, who thought I would like to take a psychiatry elective with a local psychiatrist. This was an amazing experience and I could see that if you were aggressively working to help people with real expectations that many got better or improved markedly. Prior to that elective, I mostly saw psychiatrists as talkers and not result oriented in medical school. I was always a results oriented sort of person, thus my interest in surgery. However, there were some awesome psychiatry lectures in medical school and I thought it would be great to learn psychiatry, but I had no intention of becoming a psychiatrist. I asked the doctor in charge of the elective and Dr. Krug where the best place to learn psychiatry was, and they said Massachusetts General Hospital (MGH). I applied and was accepted for training and finished up there and stayed on the faculty ever since.

While in residency at MGH I saw a few OCD patients and was fascinated with these patients who would do crazy and seemingly purposeless rituals for hours despite being totally sane. They were really nice people but they were suffering as much as anyone I had ever seen. I was always interested in lessening people’s suffering so this intrigued me. Also, the total lack of knowledge in my supervisors about OCD was astounding. No one thought they could be helped. OCD became my hobby. During these early years of my career, I ran the MGH inpatient psychiatric department and founded and ran the MGH dementia clinic for about 15 years. I mostly published in geriatrics and dementia with occasional OCD papers. We thought OCD was very rare. Out of the blue, the Larry King TV show called me and wanted me to go on the show with an OCD patient. Their request was for me to discuss where you could shoot yourself to improve mental illness. There had been a report of a young man with depression and OCD who shot himself in the front of his head and he recovered and his OCD and depression were gone. After that, we got over a hundred calls a day for a long while. The OCD disorder that we felt was very rare was obviously not uncommon. Soon after a large study came out showing a prevalence of OCD of over 1 percent of the population. With the onslaught of OCD patients I gradually shifted to mostly doing OCD clinical work and research. Over the next few decades we branched into all kinds of clinical trials, genetic studies, neuroimaging studies, and innovative treatments. The staff grew to over a hundred people, and we now have a huge clinic at MGH headed by Dr. Sabine Wilhelm that specializes in OCD and also related disorders like body dysmorphic disorder, trichotillomania, Tourette syndrome, et cetera.

51EMM0TnXeL._SX328_BO1,204,203,200_

You contributed to Life in Rewind: The Story of a Young Courageous Man Who Persevered Over OCD and the Harvard Doctor Who Broke All the Rules to Help Him. That’s a long subtitle—did you really break all the rules, and did doing so change the course of OCD treatment for generations to come?

I don’t really worry about the rules if they get in the way of patient care. I was told when I was in training that psychiatrists are not allowed to make house calls but my patients were stuck and could not get out of the house so I saw no other way. I don’t break rules just to break them (I hope). It seemed silly to have a nonsense rule that prevented very ill patients from getting help. We have systematically set up a group of master’s-level clinicians to go into people’s homes to treat severely ill patients. I do think this is a model for the country but funding is a problem. I have gotten around this by very generous donations from a few people that allow me to pay these clinicians well to do this work. I still spend much of my time out of the office seeing people on their turf. I find this fun and exciting, and the results can be fantastic. Ed Zine, the person in the book you mention, is doing great. He has two teenage daughters and a wonderful wife. He has gone back to school to become a therapist and wants to help OCD patients. He will talk to patients on the phone to help motivate them. Could anything be more rewarding?

Jeff Szymanski said he credits you with setting the tone of the annual OCD Conferences because you were always willing to answer questions after your sessions—once for 12 hours. I’ll quote him here from the wrap-up podcast he did after last year’s conference: “If you see Dr. Jenike, shake his hand. He really set that norm of, ‘You’re here, you’re working, you’re going to be generous.'” Did these early experiences surprise you, or did they confirm what you already knew, that people desperately needed help and resources for OCD?

That was always my style. I gave the keynote talk at the Boston annual conference and after there were many questions. I told the audience I would stay till all their questions were answered. After a while they moved us to another room, and I was there over 12 hours, and it was a totally amazing experience. Each question is worth taking seriously as sometimes you answer a question or send a patient to a good clinician and that few minutes changes their or their children’s lives forever. Each year at the annual conference people come up to me and report how well they are doing. Life is short; if I can make such a difference it makes what I do totally worthwhile. This is such rewarding work.

Through my advocacy work I’ve met lots of other people with OCD, and so many of them either refuse to take medication in the first place or decide to go off it because they see it as a crutch. Say you have a patient you think could benefit from medication, but she is either afraid or thinks taking medication is a sign of weakness. What would you tell her?

This is always a hard problem. Sometimes medication helps a lot and people decide to stop it even though they are not having much in terms of side effects. If people get well after long periods of illness, there are demands on them. Work. Family. Dating. Et cetera. It is sometimes easier just to go back to the old and “comfortable” illness. Some people almost see OCD as an old friend. I explain that using meds for OCD is really no different from a diabetic using pills or insulin to control their sugar. The person has an illness and the medication can help them lead a more normal life.

Who can benefit from a residential program like OCDI? Would an individual with OCD enroll only after exhausting medication and outpatient ERP?

Usually outpatient treatment like behavior therapy and medications are tried before the OCDI. Most patients at the OCDI have not done well with these treatments.

untitled

I have what some people call pure O; I mostly struggle with obsessions and don’t perform physical compulsions such as hand-washing. How would my OCD be treated at OCDI? 

Patients with so-called pure O all have compulsions but the compulsions are mental. If you look at it like that, the treatments are similar. They can read Lee Baer’s book The Imp of the Mind for detailed instructions on how to manage the thoughts. Everyone has intrusive thoughts but they pass through the brain quickly if you don’t have OCD. If you have OCD, the thoughts can get stuck and a person will ruminate about the thought; what it means, are they a bad person, et cetera. The pure O patient has to learn to just let the thoughts be there and not analyze or ritualize about the thought. Similar to a person who washes away contaminants; they just contaminate themselves and then not wash.

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

Don’t let your OCD go untreated. Thousands of people just accept OCD and don’t take advantage of treatments that may do a world of good. OCD sucks the enjoyment out of life and life is meant to be enjoyed. It is short (I realize this more now that I am older) and there is no cosmic requirement for lifelong suffering.

Advertisements

Tuesday Q&A: Gail Bernstein

Standard

Bernstein GailMOIt’s Tuesday already! Welcome back. This week I’m hosting Dr. Gail Bernstein, who specializes in child and adolescent psychiatry at the University of Minnesota in Minneapolis. Parents, this Q&A is for you—especially so if you live in the Twin Cities. Your children are not alone, and there is hope for them! Dr. Bernstein is brilliant and kind and has dedicated her career to helping kids and teens with OCD and anxiety disorders.

Are there certain symptoms among children that are more common than others?

The most common obsessions in children and adolescents with OCD are worries about contamination (e.g., germs and dirt) and aggressive thoughts (e.g., fears of harm to self or others). The most common compulsions are checking (e.g., that doors are locked, everything is in the child’s backpack, oven is turned off) and excessive hand washing. Children are more likely than adults to show OCD symptoms of hoarding (i.e., excessive acquisition of objects and difficulty throwing the objects away). Sexual and religious obsessions are fairly common in adolescents with OCD.

I wasn’t diagnosed with OCD until my mid-20s, and I’ve met several other people with the same story, so I’m a little amazed at how many kids are diagnosed long before that. What signs are their parents seeing that help them realize it might be OCD?

Children with OCD may seek reassurance from parents repeatedly. They may want parents to participate in rituals such as bedtime rituals. In addition, parents may be asked to do daily laundry due to a child’s concern that his/her clothes or towels are contaminated. Parents may notice that it takes longer for their child to complete homework due to checking and repeating rituals (e.g., rereading, erasing answers multiple times, and rewriting answers). These behaviors can be clues to parents that their child is struggling with OCD.

How can parents help their children through therapy?

Most cognitive-behavioral therapists include the parent(s) in a portion of each therapy session so that parents can learn what skills are being taught to their child and what homework (exposure) assignments are being given each week. Parents can serve as coaches for their children in working on exposure assignments at home.

I often tell people that in order to support someone with OCD they need to go against their normal instincts—that is, constantly reassuring the person that their fear won’t be realized actually isn’t helpful, and taking over their rituals for them is just another compulsion. Is this an ongoing struggle in families?

Yes. Most parents who have a child with OCD “accommodate” to their child’s OCD symptoms. This means that they change family routines or interactions with their child in a way that allows the child to engage in the OCD rituals and they may participate in rituals with their child. Although this may seem to be supportive to the children, it is counterproductive in that it allows the children with OCD to continue engaging in their impairing OCD symptoms.

People may be surprised to know that even young children can have taboo obsessions, including sexual, violent, and religious obsessions. What might you tell a parent who can’t understand why their child is having such intrusive thoughts?

Taboo or forbidden thoughts are not uncommon in pediatric OCD. This may occur in young children and it happens frequently in adolescents with OCD. These thoughts do not represent your child’s true beliefs or values, but are a manifestation of OCD and should be viewed as “the mind playing a trick” on the child or adolescent. Antidepressant medications (such as sertraline) can be helpful in reducing the frequency and intensity of these obsessional thoughts.

What do you think about the warning that antidepressants may increase suicidal thoughts in teenagers? What can you tell us about the safety and efficacy of these medications for children and teens?

The risk of new suicidal ideation is 2% in children and adolescents with depression when taking an antidepressant. There is no increased risk in suicidal thoughts for children and adolescents with anxiety or OCD when taking an antidepressant.

You’re currently conducting a study at the University of Minnesota in which children ages 8 to 17 take sertraline, the generic version of Zoloft. You take a brain scan (MRI) at both the beginning of the study, before the child starts the medication, and at the end. What differences between the two scans can you share with us?

We have just published our first paper from the pilot data for our study. It shows that teenagers with OCD compared to matched healthy controls have lower connectivity (i.e., impaired connections between nerve cells) in the brain between the putamen (area in the basal ganglia) and parts of the frontal cortex and the insula. In our current study, we will be looking to see if we replicate these results and to see if these connectivity differences normalize after 12 weeks of sertraline.

How can parents get their child involved in this study?

We are looking for children and adolescents with OCD (ages 8-17) who are not currently taking antidepressants to participate in the 12-week treatment study with sertraline. Sertraline is FDA-approved for the treatment of pediatric OCD. Children will be compensated for the assessments and MRIs (noninvasive brain scans with no radiation) at the beginning and end of the study. All OCD participants will be seen regularly by Dr. Bernstein over a 12-week period for monitoring of the sertraline trial. Medication management appointments are free because the study is funded by the National Institute of Mental Health. Please call Elizabeth, the project coordinator, at 612-625-1632 to learn more about the study and to participate in a phone screen to find out if your child is eligible to participate. You may also visit our website.

If you could offer just one piece of advice to a parent whose child has OCD, what would it be?

Early identification and treatment are important to getting relief and remission of OCD symptoms. It will allow your child to get back on the normal developmental path.

Tuesday Q&A: Jeff Bell

Standard

Happy Tuesday! For this installment of Tuesday Q&A we’re hearing from Jeff Bell, an amazing advocate, the author of Rewind, Replay, Repeat and When in Doubt, Make Belief, a board member and spokesperson for the International OCD Foundation, and an award-winning radio news broadcaster. Oh, and husband, father, and friend to many. He’ll tell you all about his tough love message–and it’s true, when it comes to OCD he does practice tough love—but he has the biggest, warmest heart. The emphasis is really on the love part of that equation.

Jeff is serious about spreading awareness about OCD, but he has a great sense of humor, so I started off our interview with a silly question: “We met at the OCD Conference last summer. Be honest. How intimidated were you by my star power?”

He laughed, of course. I mean come on, he is the true star.

JeffBellOkay, but now I have a real question. You were participating at the OCD Conference. You’re an IOCDF board member and spokesperson. How did you get involved with the organization?

I was really fortunate to have had the opportunity to keynote with Liz McIngvale in Houston in 2007, and after having done that I was offered an opportunity to get involved with the IOCDF. As soon as I sat down with this amazing group of people, the board of directors, I knew in an instant this was a project I wanted to be a part of. I was very fortunate to join the board and become a spokesperson, and it’s been incredibly rewarding ever since.

Like so many of us with OCD, it took you years of struggle and pain before you were diagnosed. Even though you’d been seeing a therapist, you diagnosed yourself with OCD while she was on vacation.

That is correct. I like to say that I finally let my inner investigator and reporter take charge, because I am a journalist by trade. I realized after a couple of misdiagnoses that there was something missing, and I wanted to go about getting answers in the same way I would go about getting answers to a story I was investigating. So I started doing some research. I went to a bookstore. As the story goes, I was so fixated on what would happen if somebody saw me in the psychology section of a bookstore that I was prepared to come up with an elaborate ruse as to why I was actually there. I was really fortunate that I stumbled across a book called The Boy Who Couldn’t Stop Washing by Dr. Judith Rappaport, and fortunately for me, the very first story in that book is a man driving down a highway who becomes convinced that he’s run people over and turns his car around to go check to make sure that that’s not the case. My first reaction, honest to god, was I don’t remember writing a book! It was that uncanny. I didn’t realize that other people did these same things that I was doing. And I cannot imagine that as long as I live there will ever be a more powerful moment in my life, because in that moment, reading that book and reading the first few pages, I realized three things: One, I’m not the only person who does these seemingly crazy things, the compulsions. Two, the author has a name for the disorder. She calls it OCD, obsessive-compulsive disorder. And three, there’s a treatment. I did not know any of those three things before stumbling across that book.

Your OCD manifested itself after you were married. Your wife, of course, wanted you to stop driving in circles, checking and rechecking to see whether you’d accidentally run someone over. What advice do you have for those who have family members with OCD? What is the best way to support them, without enabling them?

Man, that really is a tricky question, Alison, because it’s our human nature that we want to provide comfort to people. That makes things so challenging for a spouse or a parent or a loved one or a friend of someone dealing with OCD, who with the best of intentions wants to provide comfort when in fact we know that that can be very counterproductive in the OCD treatment world. My therapist was shrewd enough to bring Samantha, my wife, into the equation and help her understand when she was helping me and when she was actually unwittingly hurting me in terms of enabling my compulsions and getting in the way of my recovery. I think that was such an important component of my own treatment process. I’m really encouraged to hear more and more from clients and professionals that this is becoming a part of the process, bringing in loved ones., helping them understand the do’s and don’ts of OCD treatment support.

After seeing several doctors who either misdiagnosed you or recommended the wrong kind of therapy for OCD, you found one who knew exactly what to do. She understood OCD and knew ERP was the right treatment. But you didn’t do the homework she assigned you. While you did waste some of her time, you really cheated yourself. What advice do you have for someone who’s struggling through ERP, for someone who wants to give up and give in to OCD?

Yeah, that is the crux of all of this and the crux of my own outreach. I have a very tough love message, Alison. There are no shortcuts. I can say that as somebody who spent years looking for them. Alas, I did not find them. I paid lip service to my therapy for far too long. I sat through my therapy sessions, I nodded my head when my therapist asked if I was doing the homework she’d assigned me, and yet for all intents and purposes I was spending a lot of money to go in and lie. In retrospect I question, well, why was I doing that? I think I was giving myself some credit for actually trying to do something proactive and yet I wasn’t willing to do the hard work that it took to get better. And I became bitter after a while. Why couldn’t this therapist fix me? Why couldn’t anybody fix me? And it was only when I started shifting my thinking and realizing that I had a huge role in this process, the most important role as far as I’m concerned. I needed to bring to the table the passion for getting better, the motivation for getting better, the willpower and the strength to do the treatment process. So, why wasn’t I doing it? Because this therapy is really, really hard, and what was lacking for me was something right in front of me that would remind me of what was at stake and what the motivation I needed was.

My message over the years has been pretty much a tough love message that we’re very fortunate in the OCD community to have a treatment process that works. ERP works. We know that, scientifically. But it’s only as effective as our ability to apply it in a meaningful way. And for me, what was missing was motivation. And so most of my outreach over the years has been helping people stay motivated through the treatment process. I talk about what I call greater good motivation, and this is a motivation technique that I learned. When I am able to shift my decision making in a constructive way that allows me to call out greater good goals, I’m able to willfully choose to sit with the anxiety–because that’s ultimately what we’re trying to do, sit with anxiety. And with the right motivation, we can willfully choose to sit with anxiety.

You’ve stated that you found your peace with medication. What were your hesitations about taking medication, and what changed your mind?

I struggled, like so many people with OCD struggle with medication, in that I was afraid it was going to change me or take away that much more of my sense of control. OCD is so much about control. I was afraid. I couldn’t trust my judgment as is; was I going to be worse if I was on medication? Could I ever trust my judgment? I was making all kinds of excuses for not going on medication. An OCD sufferer’s world tends to be very black and white, and so for me there were two different kinds of people in the world: Somebody who didn’t need medication, and somebody who did. There was a part of me that thought if I were strong enough I wouldn’t need this medication. And I almost saw it as a sign of weakness. That was all part of the challenge I was facing with medication. I also remember having a conversation with my wife, when I said, “What if this changes who I am?” and she answered me in a very compassionate way. She said, “Is this who you want to be?” and she didn’t mean it to be a nasty comment; she was asking me to evaluate honestly if I was happy with who I was dealing with OCD the way I had been at that juncture. It was a really pointed question because I had to think, “No, I’m not happy with who I am.” And I very reluctantly agreed to try medication, and it made a huge difference for me. I realized it was not at all a sign of weakness, it was a sign of strength, it was a sign of courage, to be able to try something that was such a challenge for me to try. Once I did, I realized, oh my goodness, this stuff really makes a huge difference for me, mostly because it toned down, if you will, the intensity of the OCD to an extent that I was able to do the hard work of exposure therapy. Part of my message is that I believe we need to learn the tools afforded by exposure and response prevention therapy, that I don’t think there’s a real shortcut around that, and in my own experience I have found proper medication has allowed me to get a leg up on the ERP work and be that much more effective at it. It’s been an incredibly helpful tool for me.

JeffandMargaret

Jeff with Margaret Sisson, fellow OCD advocate

You’re so involved in the OCD community. Do you have any advice for young people who may want to advocate on a grassroots level?

I do indeed. I believe that we help ourselves by helping others. That’s sort of been my mantra through my OCD advocacy, and mental health advocacy in general. And I would like to encourage everyone to be able to learn that in fact is the case, and the way to learn that is to find ways to be of service in their community. I have learned that there is a special magic in being of service to people who are challenged by OCD, by challenges that we ourselves have been through. When there are opportunities for somebody with OCD to help other people with OCD, I would strongly encourage those people to take those opportunities, and we have those in our community. We can get involved with the IOCDF and be a part of the IOCDF community, we can offer to write stories and share our stories through the IOCDF newsletter.

I have a project that I’m involved with, and that I’m very excited about, called Project Hope Exchange. This is an opportunity for anybody, in 30 seconds’ time, to leave a message of encouragement for somebody else challenged by their own challenge, and so for an OCD sufferer, they could get involved with Project Hope Exchange and leave a 30-second message of hope for somebody else with OCD. They can do it anonymously or on a first-name basis only, but, at every turn, the concept is we help ourselves by helping others.

There’s something very powerful for people with OCD when they’re afforded an opportunity to help other people with OCD, and so by all means I would encourage people to take those opportunities, and that does not necessarily mean going public. That’s a question that I get a lot and I’m sure that you get a lot as well, Alison. We’ve shared our stories openly: Should everybody? And the answer is no. It’s a very individual question to be considered deeply by anybody considering sharing their story. I would encourage people to give that a lot of thought. There is something wonderful about speaking openly about our OCD, but it can be sharing with a few friends, or it can even be sharing an OCD story anonymously. It can just be quietly serving other people with OCD by getting involved and volunteering for an organization like the IOCDF.

You and I have both written books about our personal experiences with OCD, as you just mentioned. Sometimes I still worry that I’ve said too much and I’ll regret this choice someday. Did you have moments during the book publishing process when you worried that you were making a mistake by revealing so many personal details about your life? 

Oh, absolutely. That was a really scary juncture for me. Prior to the publication of my first book, I could probably count on one hand the people in my world who knew about my challenges with OCD. And then suddenly the entire world, or anyone who wanted to spend $13.95 or whatever, could read the book, and that was really sobering. I sometimes liken the whole process to this: I imagined when I published the book that I was going to open this door to a very scary place and turn on the lights to this new world of advocacy and be met by a bunch of monsters on the other side who were going to gobble me up, and instead I opened the door and turned on the lights and there were all these amazing people with their arms wide open saying, “Welcome.” And those were the other advocates out there. Those were the other people who forged a path for people like you and me, who had bravely shared their own stories. And not only in the OCD community, but in so many different adversities. I immediately became part of their community and learned through them. There’s a phenomenal community of folks out there who are doing first-person advocacy because of what they’ve been through, or what we refer to as adversity-driven advocacy. It’s been such a privilege to be part of that community.

A2A-LogoSpeaking of, tell us more about the A2A Alliance.

Yes, thank you for asking! A big theme of my books has been this notion that I was able to help myself by helping others and that I identified what I call greater good goals that were bigger than my OCD, bigger than me, that allowed me to find a strength that I didn’t know I had. When I published the first book, and started publicly speaking about my OCD, I found that the more I was able to share my story, the more I was able to do something meaningful with what I’d been through, the stronger I was getting. And that led to my second book, which was more of an exploration of that whole process, of the greater good motivation, and this notion that we help ourselves by helping others. I started networking with all these amazing people, those very same people I referenced that are part of the advocacy community. I call them adversity-driven advocates, people who are doing what they’re doing because of what they’ve been through themselves. Cancer survivors reaching out to other cancer survivors, folks who have dealt with a form of mental illness reaching out and supporting others who have dealt with that form of mental illness, and right on down the line.

I became fascinated by this common thread that I had friends who were dealing with cancer or other physical ailments that were slightly different from my own challenge, that presented completely different challenges from my own with OCD, and yet we shared this common link that we were both finding great motivation by supporting other people in our respective adversity communities. I wanted to do something that would help facilitate the ability for people to tap into this notion that we help ourselves by helping others, and it sort of grew out of another challenge that I had, which was people coming to me and saying, “You know, I love what you’re doing in terms of advocacy, but I don’t wanna write a book, I’m not sure what to do. What can I do?” and I never had great answers for those people. That’s when I started playing with the notion of creating something that people could be a part of that would afford them opportunities to be advocates, even in a small-scale way. Part of that vision was to network a number of people across a variety of different adversities who could kind of lead the way.

Over the past three years, we have networked over 50 leading adversity-driven advocates across dozens of different adversities who are out there setting examples for people to follow of what it’s like to do this adversity-driven advocacy. Part of our commitment is providing pathways to advocacy for people who want to step into advocacy. We also work with leading researchers who are providing empirical support to this notion that we help ourselves by helping others, researchers at Harvard and UC Berkeley, for example, who are doing phenomenal research around altruism, around a sense of purpose, around compassion and empathy, and so forth.

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

It sounds like a cliché, but I think this encapsulates everything I try to put out there: Choose to believe beyond your doubt.

Tuesday Q&A: Jackie Lea Sommers

Standard

Jackie Lea Sommers headshot7

Have I mentioned how lucky I am to know so many wonderful people in the OCD community? It wasn’t that long ago that I’d never even met one other person with OCD—let alone someone who had an experience so similar to mine.

Fate stepped in when the International OCD Foundation asked both me and Jackie Lea Sommers to blog about our personal experiences with OCD. In Jackie’s first post she mentioned that she grew up in a small town in Minnesota—hey, me too! So I wrote a comment after her post telling her how great it was and that I’d love to connect sometime.

We met for coffee–even though Jackie doesn’t actually drink coffee–and the rest is history. Here was someone who really understood OCD, right in my own backyard. We’d both struggled with HOCD and scrupulosity, too. When the IOCDF asked us if we’d run their Minneapolis affiliate, OCD Twin Cities, we said yes with the caveat that we’re busy women—with an anxiety disorder! Of course, the IOCDF knows a thing or two about that, so we talked it all through and got the ball rolling. Jackie’s the communications specialist, a great fit for her. You’ll understand why when you read our Q&A below—she has a way with words and a passion for connecting others to the proper treatment.

Jackie, Jackie, Jackie. You’re my trusted OCD Twin Cities partner, you have a popular blog with a substantial section on OCD, and you often speak at University of Northwestern about your personal experience with the disorder. But long before you became an advocate, you suffered in silence. How many years did you struggle with obsessions and compulsions before you were diagnosed and got help?

In hindsight, I can see that my OCD kicked in at age seven. I was finally diagnosed 15 years later. But even after my diagnosis, it still took another five years before I finally underwent the exposure and response prevention (ERP) therapy that gave me back my freedom!

You left no stone unturned as you worked to get relief. You tried several medications before you found the right combination for you, and you finally went through 12 weeks of ERP. How did you keep the faith and keep on pushing through the disappointments and doubts?

Five years of failed medication and talk therapy is really disheartening. I had one therapist who made me feel worthless and ashamed; after I quit seeing her, I avoided therapy for a year or so. The same thing happened with meds. I’ve had just about every side effect in the book—vision loss, weight gain, tremors, dry mouth, excessive sweating, blocking (a form of stuttering), lactation (yes, really), and a near-fatal allergic reaction—but it was the extreme lethargy I experienced on one prescription that finally made me avoid all medication for a year. When I went back (and tried a couple more failed meds), my psychiatrist finally referred me to an OCD expert. He got me on the right medication and into ERP therapy almost immediately. It was worth it all.

I know you were scared to go through ERP, and you’ve described the process as hell on earth. Now you’re one of its strongest advocates. Tell us why.

I like to say that ERP is the second hardest thing I’ve ever had to do—but the absolute hardest was living daily life with OCD. When you look at it that way, it makes sense. I chose to do something hard for twelve weeks so that I wouldn’t have to live with the hardest for the rest of my life.

ERP is the frontline treatment for OCD; it shouldn’t have taken five years after my diagnosis for someone to recommend it to me. That’s why I tell the OCD sufferers who read my blog to run toward ERP. Twenty years of OCD bondage was broken for me in just twelve weeks of ERP therapy.

You’re on medication, too, which can carry such a stigma. I know people within the OCD community who consider it a badge of honor to get through it all without ever going on medication, or eventually weaning themselves off it. Have you ever questioned whether you should take medication for your OCD? What keeps you taking it day in and day out?

I’ve never been ashamed of my medication. There’s no reason for me to be. I have something off chemically in my body, so I’m fixing it chemically so that I have all the same advantages as everyone else. I know that the stigma exists, but it’s hard for me to understand why. Do those same people think that diabetics shouldn’t get insulin shots?

I fought for my freedom from OCD. I went through years of side effects to find the right medication. I’m proud of my persistence to get the help I needed. These things feel a little narcissistic to say, but I say them anyway because I want other people to be able to say them too!

If someone asked me to describe you in just a few words, I may have to go with “devout Christian.” Your faith plays such a tremendous role in not only your recovery from OCD but in your life as a whole. But that doesn’t mean you think prayer alone is the answer to OCD or any mental illness. Was there a time when you thought prayer alone might save you, and how did you realize you needed professional help? 

Oh yes, definitely. I spent the majority of my high school and college life praying for deliverance from OCD (though I didn’t know it was OCD at the time). When I finally started to get help, it was with a Christian therapist and a Christian psychiatrist—then another Christian therapist, then another Christian psychiatrist. But what I needed was someone skilled in treating ERP—whether they were a Christian or not. When you have scrupulosity and other religious obsessions, you can get tied up in trying to “solve” your obsessions (i.e. compulsions)—instead of treating OCD. It’s a very clever distraction OCD uses to keep itself in power. But OCD is a medical problem; it needs to be treated. If I was about to have heart surgery, would I want to find a kind Christian doctor—or an expert heart surgeon? Hands-down, I’d choose the expert. And that’s what I needed to do with treating my OCD too—find someone who understood OCD, not someone who understood my faith.

UNW

Jackie draws a crowd at University of Northwestern

One of the types of OCD you’ve really struggled with is scrupulosity, and in that case prayer can actually be a compulsion! How does someone with faith reconcile this and recognize the difference between obsessive behaviors and a healthy devotion?

My ERP therapist asked me early on, “Can you tell the difference between when you’re praying obsessively/ritualistically and when you’re engaged in honest worship or prayer?” I said yes and meant it. One happened as a compulsion, with a racing heart, intense anxiety, and a feeling that I was just trying to distract myself. The other was a conversation with someone I love intensely. The gap between the two is great, and that gulf has only widened in my mind the more I’ve been set free from OCD!

Your blog serves as both an inspiration and practical resource for your many readers with OCD. Why did you decide to start a blog and devote much of it to OCD? And, come on—how hard was it at first to put some of your obsessions out there for others to read? 

To be honest, I started the blog to help build a platform for myself as a writer, and at the time I was writing about OCD (as I am again!), so it felt natural to reach out to such an audience as it might be the same people who’d be interested in the story I was writing. But over the years, it’s become more of a labor of love. The more I have interacted with the OCD community, the more I love it and hurt for it. I so greatly desire for there to be a landing page when a frustrated parent Googles “my child thinks bad thoughts” or when a person in an identity crisis searches “I am straight but think I’m gay.” I want that landing page to be my website—and for it to immediately point them to the solution of ERP therapy.

As far as being scared to put my obsessions “out there,” it definitely has depended on the obsession. I spent so many years in shame; it’s hard to shed that like a coat! But, bit by bit, I’ve peeled it back—or rather, the acceptance I’ve gotten from people, the kind reactions, the “me too”s have done so. When I feel fear about putting an obsession online, I think of the people out there who think they are the only ones, and I want them to know they’re not alone, so that sort of drives me to write about experiences that maybe I’d rather not make public. I know how hard it is to speak first, but since I’ve found such freedom and confidence, I’m willing to do it, so that other people can say, “Me too.” I think of it as a gift.

After years of responding to pretty much everyone who ever reached out to you for help, you made the difficult decision to shut down the email portion of your blog. Why did you move forward with this decision, even though you initially felt guilty about it?

I am so honored by every email I receive from brave OCD sufferers willing to share their story, but after about 2,500 emails in the course of a couple years, it was beginning to be more than I could handle. I’m not a professional, not equipped to handle so much pain being handed to me over and over and over. Eventually I had to take my email address off my website and write a generic but heartfelt letter to all OCD sufferers with my best advice to them: find a skilled ERP therapist or do ERP on your own with a book to guide you. For so long, I wanted to be everyone’s cheerleader, to cheer them on to health—but it wasn’t healthy for me! It was a hard decision to step back, but I needed to be a writer and blogger and OCD survivor, and let that be enough.

Your young adult novel, Truest, will be released by Harper-Collins September 1 this year. But before Truest you wrote a novel about OCD, which you share on your blog. How did you decide to write a book about such a personal experience, even as fiction? Did you find it therapeutic?

It was very therapeutic. In fact, it helped me to understand what had really happened during ERP therapy! Though that book will never see the light of day, I’m writing another young adult novel now about a character with OCD. It’s interesting to be writing fiction about OCD again. I don’t always like it. But I love the characters and am excited that it might shed some light on OCD for teens.

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

ERP, ERP, ERP!