Alison Dotson's Blog, page 13

Tuesday Q&A: Denis Asselin

Denis on his pilgrimage

Welcome back to Tuesday Q&A! I admit the hiatus wasn’t exactly planned; life and the holidays conspired to throw me off schedule.

I couldn’t be happier to kick off the New Year with this post from Denis Asselin, an amazing advocate who’s been working tirelessly and with compassion to spread awareness about body dysmorphic disorder (BDD) since his son, Nathaniel, committed suicide after struggling with the disorder for years.

We all know how misunderstood OCD is, and it’s possible BDD is even more misunderstood. Denis is working hard to change that. His dedication is inspiring — and, honestly, he is so nice. Incredibly, genuinely nice. You can’t help but want to help him tell Nathaniel’s story and join his cause.

Q. I’m always amazed to see what a parent is capable of after the tremendous pain of losing a child. After your son, Nathaniel, committed suicide you took action. Since 2012 you have participated in your initiative, “Walking With Nathaniel,” walking thousands of miles and raising thousands of dollars to spread awareness of the illness that led to Nathaniel’s death, BDD. Tell us why.

A. What does a parent do when s/he loses a child? Initially, cry a lot. What an incredibly sad event! Losing a child is the ultimate loss, and definitely not the natural order of things. The event and its repercussions were so significant. We were like ants at the base of Mt. Everest, required to climb to the very summit. I not only lost my personal and spiritual “equilibrium,” but initially I also lost a sense of purpose for living. As a father, I’m instinctually programmed to preserve and protect my children, and through no fault of my own, it felt as if I had failed in that critical mission. So what’s next when the void looms so large before you?

I distinctly remember seeing myself at a junction, the intersection of two possible paths to take for the rest of my life — one was to inevitably fold into myself, live in constant self-pity, be perpetually grumpy, and see myself as the ultimate victim. The energy required in the choice of that particular path would be dark, negative, and all-consuming. My social arena would close and include no one else; I would be a hermit and I would yell and blame everyone for everything, consider the universe totally unfair, and spread an aura of darkness wherever I found myself. The other road led to slow and progressive healing, to an eventual reordering of my life with what is (not what should have been). Bitterness would eventually melt away, and new possibilities would slowly reveal themselves and emerge. I would slowly see beauty and light pierce the huge darkness and recognize once again the gift of possible life and living before me, rather than a death in life. That vision/possibility included a forward movement — first in small steps and then in bigger ones. To me, walking forward reflected that outward expansion and healing.

After my wife, Judy, and my daughter, Carrie, and I returned from Spain where we had walked for three weeks on the Camino de Santiago after Nathaniel’s death, I felt as if I had more walk in me. Every time I took a step forward, I felt much better. At first I started to walk in circles (daily walks around the neighborhood) in wider and wider concentric circles. It was during those circular peregrinations that I hatched the plan to walk in a line rather than in a circle from our hometown (Cheyney, PA) to Boston, MA. I envisioned a new kind of “pilgrimage” à la El Camino, but here in the USA instead — a personal spiritual and physical journey of healing. I asked myself, “What would it look like to walk out my front door and go to Boston (the home of the International OCD Foundation, connecting along the way all the happy and sad chapters/places/events in Nathaniel’s life like dots on a trail map (where he was born, where he went to school, where he got his first job, where he died, where he was first hospitalized, where he stayed in clinics and treatment centers thereafter, where he had appointments with his doctors, psychiatrist, psychologists, and counselors)?” The imagined trajectory spanned 552 miles to Boston where he had spent an entire day in the Emergency Room at Mass General back in 2009 desperately seeking help because he couldn’t do “his life” anymore. I wanted my pilgrimage to end at the Boston harbor, at the water’s edge (just like Finisterre over the cliffs of the Atlantic in Spain at the end of the Camino). I would then face toward the east where the sun rises — again a symbol of an opening rather than a closure. That is how the Camino de Nathaniel was born and executed in 2012.

Denis walking with Nathaniel

Q. Tell us about Nathaniel. What kind of kid was he? What was he passionate about?

A. Nathaniel was an amazing human being. His spirit could fill the room, so could his physical presence — he was tall, handsome, fit, intelligent, highly responsible, sensitive, compassionate, loving, magnetic, funny, engaging, strong, athletic, generous, quick of mind, creative, energetic, positive, in brief a very old soul. I’m not saying this because he was my son. I recognized his incredible gifts and talents starting on the day he was born. He stared me in the eyes letting me know he was ready to journey forth. His close friends, Judy, Carrie, and extended family members would also describe him with the same litany of adjectives. Everyone loved Nathaniel. His force field was so strong. Everyone wanted to be his friend. Everyone wanted to be in his presence. Unfortunately, OCD/BDD slowly gnawed away at these incredible positive attributes during the long years of his illness. But even in the depth of his sickness, those deeply rooted qualities still radiated through in some recognizable measure. He was passionate about running, playing, and engaging in creative and imaginative games, staying fit, and doing his very best at all the time.

Q. When was Nathaniel diagnosed with BDD, and how did you realize something might be wrong?

A. Unfortunately, the BDD diagnosis came much later during his 13-year illness, when he was 17. He was hospitalized at 11 for OCD behavior (but somehow the diagnosis seemed incomplete and not totally accurate). Then we began to see him spend more and more time in the bathroom grooming himself, worrying about flab on his tummy (there was actually none there) and imagined dark circles under his eyes, the placement of his hair, and the quality of his skin (any marks on his face would ruin his day and keep him in the bathroom for hours picking at it). He spent less and less time with his friends and worried more and more about his appearance and looks. He would look away and avoided eye contact. He shaved in the darkness in the bathroom, and returned repeatedly thereafter checking on imagined flaws on his face that he saw in the mirror. He literally got stuck in the mirror and the bathroom for hours on a daily basis. His social circle and connections began to get smaller. His social life slowly diminished. School became an issue. He would always overdo his assignments, not be able to live with anything less than perfection, and even be hard on himself for not knowing in advance what a teacher was going to teach him that day before s/he did. We had to withdraw him from formal schooling by his sophomore year in high school. The initial change in personality and in behavior came quickly at age 11 and then it was the unpredictable roller coaster ride up and down during the subsequent years as therapists, counselors, doctors, and we tried to understand what was going on with our dear boy/young man.

Q. Why do you think so few understand what BDD is? How would you explain it to someone who has never heard of it before?

A. BDD is poorly understood because it hadn’t been recognized as a disorder until the mid 1980s. Katharine Phillips put the brain disorder on the map with her famous book The Broken Mirror. Everything she described in the text, Nathaniel had and had experienced. Although the disorder label was publicly available, very few therapists recognized its behavioral manifestations in their patients. If you were tall and handsome and beautiful like Nathaniel, would you feel comfortable announcing to others that you were obsessed all day with unrelenting worries about your looks? Folks would think you were vain. So, in general, sufferers tend to say nothing. They simply suffer in silence. Unlike the other OCD-related disorders, BDD self-awareness is rather poor. We now know that a BDD sufferer has perceptional processing problems, which accounts for the distortions described above. Nevertheless, what a sufferer sees, s/he totally and truly believes to be true. It is difficult for that person to achieve any level of objectivity. It affects up to 2% of the population. That’s a high percentage rate, yet mention BDD to anyone on the street, and you get a blank stare in return. Nobody seems to know it. Given the high suicide rate in the rank of BDD sufferers, we have a fatal illness on our hands, in my opinion. Medication dosage administered is usually twice as high in BDD cases than for the other OCD-related illnesses. Effective treatment protocol needs to be slowly and methodically administered if the sufferer is to experience any kind of relief. Of course, there are various levels of BDD illness. In hindsight, I think Nathaniel had the worst case of it. Although we sought the help and advice of the best professionals in the field, Nathaniel’s BDD progressed. There were some moments of hope for healing along the way, but the relapses were cruel and drove him even further down into the pit of despair. He could not imagine growing old with this impossible illness, and adopting a lifestyle that would require regular medication, counseling and, perhaps even occasional in-patient treatment as a tune-up. For Nathaniel, this was not a life to live for!

Q. How is BDD related to OCD? Do they share any treatment methods, such as therapy or medication?

A. The obsessive behavior of BDD sufferers is similar to what we see in OCD. However, there are many differences. I do know that the SSRIs used in treatment for BDD are almost double in dosage for effective treatment than those used for regular OCD patients. Although there are day clinics and treatment programs specifically for BDD patients, those sufferers who need hospitalization or overnight surveillance are usually grouped with OCD-ers. Good BDD therapists would suggest that the treatment protocol be administered at a slower pace and that CBT treatment be more specifically tailored to this disorder. Of course, addressing the perceptional distortion remains key to healing. This would require visual retraining that works in tandem with the long-term behavioral restructuring required for control of unwanted thoughts.

Nathaniel

Q. Let’s pretend I’ve said the following to you: “The issue is that people today are just too caught up in material things and their looks. If they would just stop being so vain and focus on their inner beauty this wouldn’t be a problem.”  

A. A BDD sufferer is anything but vain. H/she is a silent sufferer of his/her illness. The inner turmoil is constant and very unrelenting. Sufferers usually don’t dare to mention what’s on their mind 24/7. Why would they? No one would believe them based on what the observer sees. Reassurance given by others is only a temporary patch of relief. It never lasts long and only fuels the retched beast. Unfortunately, those who are rich and have the financial means have recourse to plastic surgery as a temporary solution to their angst. Unfortunately, those procedures only give temporary relief, if any. Think Michael Jackson — so many surgeries that eventually his whole face totally appeared distorted by those interventions. But he had the money to pay, and no doubt the plastic surgeons involved didn’t dare to question the patient’s motive to assess whether or not BDD was the root of the malaise. I’m so appreciative of Reid Ewing, the actor on ABC’s Modern Family, who recently came out and publicly announced that he suffers from BDD and that all the plastic surgeries he underwent did not help one bit. What is more worrisome, however, is that those same surgeons never dug deeper to discern whether or not he had BDD, a brain disorder. Now that’s really unprofessional behavior.

Q. It seems that people assume mostly women suffer from the disorder. Has anyone expressed surprise that your son had BDD? 

A. Good question. I think statistically the number is practically 50/50. Women and our cultural focus on women and fashion would suggest that BDD be more evident among females. However, muscle dsymorphia with men is gaining greater recognition these days — men who focus on their bodies, their physical build, their muscles, and their general appearance and body proportions. Our culture of aggressive advertisement that celebrates bodily perfection does not help the BDD cause, for sure. However, it was interesting for me to learn that there are even cases of BDD in remote villages in Africa where such cultural distractions and focus are absence or negligible. Check out Argentina where plastic surgery for woman is now a cultural phenomenon. How an Argentinian woman looks and the public and private discourse about her weight and size are quite disturbing phenomena, in my opinion. The culture is indeed playing a role in nurturing BDD.

Q. What advice do you have for my younger readers who may be suffering in silence? How could a teenager approach his or her parents for support — and what if parents don’t understand and refuse to believe there’s a problem?

A. Don’t suffer in silence and in isolation! Find someone you can trust and describe what’s going on inside your head, even if it sounds a bit silly in the telling. Be sure you open up to someone who is non-judgmental and a really good listener. Let him/her know how painful your daily journey is. If possible, create a team dedicated and committed to your ultimate healing (parents, siblings, and even a good and close friend, etc.). Check out the new BDD website at IOCDF launched a year ago. There is something there for everyone — sufferer, parent, sibling, educator and professional. Invite your team to consult this rich resource too. Be sure your therapist/counselor/psychiatric/psychologist knows something about BDD and is well read and well trained in the treatment protocol. Strongly suggest that your family read the most recent literature about BDD, starting with Katharine Phillips’ book The Broken Mirror. Let them know that there are now specific treatment protocol manuals available, including one co-authored by Sabine Wilheim. But more importantly, try to understand that your brain is physically broken and that is why you are experiencing what you are experiencing. The bio-chemical process is physically responsible for the perceptional distortion. And don’t forget to add into the mix daily meditation, regular exercise, and good nutrition as ways to help support your efforts to heal. Let your personal mantra be, “I can do this. We can do this. I’m not alone. We are a team working together so I can heal. I deserve to be well and whole and complete in life!”

Denis and his wife, Judy

Q. How can people get involved in spreading awareness?

A. Getting the word out is not easy. If BDD affects 2% of the population, there is a good likelihood that someone in your life is impacted by this awful illness and is suffering immensely because of it on a daily basis. And worse still, no one knows! Check out our Walking With Nathaniel website. It is the personal story of one sufferer who did not deserve to suffer so cruelly. Let my awareness efforts inspire others to do something rather than feel victimized. Join the annual IOCDF 1,000,000 steps for OCD Awareness Walks in June. Can’t make it to Boston? Create your own awareness walk. No matter how small the team or the event, when you connect with other walkers physically or virtually, the community of supporters becomes larger and awareness grows incrementally, a step at a time. That is how all journeys begin and move forward. Moving forward beats staying still and stagnant. For me, it is definitely the ultimate balm for body, mind, spirit, and soul.

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

A. Please seek help! And remember, you are not alone! There are folks out there who want to help and can!

15 Things People with OCD Want You to Know

I love talking about OCD, and it’s always interesting to see how my words are used in the final product! It’s an exercise in letting go and giving control to someone else. This time my interview–as well as several others from both people with OCD and those who treat it–was worked into a list of “15 Things People with OCD Want You to Know.”

What do you think? Would you have added anything? Removed anything? Expanded on anything?

‘Twas an OCD Night Before Christmas

Whether you celebrate Christmas or not, you can probably relate to this poem Melanie Lefebvre wrote for Lee Baer’s OCD and Families blog. Take care of yourself during this typically busy time of year!

 

Tuesday Q&A: Wendy Mueller

I don’t know what’s harder to believe, that it’s Tuesday already or that it’s December already. Here in Minnesota we’re finally getting our first inches of snow. Today’s guest, Wendy Mueller, is always eager to remind me that where she lives — Southern California — she never has to deal with snow or cold temperatures.

But Wendy’s full of useful information, too, and isn’t just adept at stating the obvious (just kidding, Wendy!). After recovering from OCD over 20 years ago, Wendy has dedicated much of her time and energy to helping others with OCD; she runs a large online support group and knows what others need to hear in order to face OCD head-on. I really have to give her credit, too — not to date Wendy, but this was before the Internet was always accessible, before you could take a photo on the bus and upload it for all of your friends to see a second later. She sought out support and stuck with it, eventually giving back to the same community that helped her so much. (But seriously, what is Prodigy?)

Let’s get Wendy’s take on it all.

Q. You run a huge online support group called the OCD-Support List. How did you become involved with this great resource?

A. Twenty-eight years ago, I developed severe OCD upon the birth of my first child. For the first year and a half, I didn’t even know what was wrong with me. I hid my OCD symptoms from everyone around me, because I thought I was going crazy and I didn’t want to be put in a psychiatric hospital. Once I found out that I had OCD (after reading an article about OCD in Newsweek magazine in early 1989), I immediately started to seek out some sort of support system so that I could talk to other people who had OCD.

When I got my first computer in 1990, I started looking around the various health “bulletin boards” on the Prodigy computer network, but I was unable to find any support groups related to OCD. So I decided to start one on my own. I created a new topic for OCD and posted a message asking if there were other people suffering from OCD, and — little by little — my small online OCD group began to grow. I moderated that Prodigy group for about seven years (we eventually had about 60 members of the group), but I also joined another larger online OCD support group that was being moderated by Chris Vertullo, an OCD advocate. Her group had hundreds of members, and it was a very active support group that also included regular contributions from several OCD experts, including Dr. James Claiborn and Dr. Michael Jenike.

When Chris decided to “retire” from leading the group in 2001, I took over leadership of the group with a few hundred members. Over the years, the group has snowballed into a huge group that now has more than 5,200 members from all over the world. Dr. Claiborn still contributes daily to the group, and I keep a close eye on the messages being posted so that we always stick to the topic of OCD.

So, the shorter answer to your question is: I started up an online support group back in 1991 because I personally wanted to communicate with other people with OCD. For four years, I was part of the online group as a sufferer. However, I recovered almost completely in 1995 (thanks to taking medication and learning exposure and response prevention [ERP]), and ever since then, I have been able to encourage and give hope to others who are still struggling by telling people my own story of recovery from severe OCD and depression.

Q. Obviously you find value in online support groups. What advantages are there to meeting online vs. meeting in person?

A. There are some great advantages to meeting in an online group, as opposed to an in-person group, but the first thing you need to do is make sure that you find an online group that is well-moderated by someone who regularly reviews the posted messages and makes sure that people stick to the topic of OCD. It’s also important to have a closely moderated group so that the moderator can correct any misinformation that is posted and also so that the moderator can intervene in the case of any angry or hurtful comments that might be posted. It’s important to have the group moderated by someone who is there regularly, keeping an eye on things on a daily basis. It’s also good to find a group that has contributions from OCD expert doctors/therapists, so that members are getting the best information and guidance possible regarding the proper treatment for OCD.

An online group is a terrific choice for people who have no local access to OCD treatment in their area or who cannot afford OCD treatment. Also, many people with OCD find it extremely hard to talk about their OCD with others — even with a therapist — but one can remain completely anonymous in an online group so that no one ever knows your true identity. You can even join an online group just to read the messages posted by other members; you can remain quiet and just “lurk,” without ever having to say a word. It can be extremely helpful to read the discussions going on between other members of the online group as well as the contributions from the OCD expert therapists in the group.

With an online group, there are no restrictions to the time of day that you can seek support. There are people posting and answering messages at all hours of the day — even in the wee hours of the night — so you can almost always get an understanding and helpful response from someone, no matter what time of day you post a message to the group.

Q. You developed postpartum OCD after your first daughter was born, and like so many other mothers you were afraid to tell anyone what you were going through — you didn’t want your child taken away, or to be involuntarily committed to a psychiatric ward. Of course, those fears were unfounded, but you didn’t know that at the time. When did you finally realize you had OCD, and how did you make the connection?

A. I finally realized I had OCD when I came upon an article in Newsweek magazine in which Patricia Perkins (one of the original founders of the International OCD Foundation) was interviewed about her OCD and about the work of IOCDF. As soon as I started reading that article, I knew — without a doubt — that’s what I had been struggling with for the last 18 months since my daughter was born. The article described exactly the type of “crazy” things I had been doing all that time — checking door locks and stove knobs, compulsively lining things up neatly and symmetrically, counting to a “magic” number in my head whenever I did things, compulsively repeating actions over and over until it “felt right,” and worrying excessively about almost everything I did all day long. As soon as I read that article, I told my psychiatrist (who was treating me for depression) that I knew I had OCD, and that was the beginning of my road to recovery. The first thing I did was join IOCDF so that I could receive their regular newsletters, and I started attending their annual conferences, starting with the very first one in October 1993 in Minneapolis.

Q. Once you knew you had OCD, how did you go about treating it?

A. At the time I finally realized that I had OCD, I was severely depressed and extremely disabled by severe OCD, depression, and anxiety. I never slept well, and I cried throughout the days, feeling hopeless and helpless about my life. At that time (1989), I believe that Prozac was the only medication that had come onto the market that was being prescribed for OCD, so I was very willing to give it a try (which I did, but was unsuccessful due to side effects I couldn’t tolerate). I also started reading any books about OCD I could get my hands on, like The Boy Who Couldn’t Stop Washing by Judith Rapoport, Getting Control: Overcoming Your Obsessions and Compulsions by Lee Baer, Stop Obsessing! by Edna Foa and Reid Wilson, and When Once Is Not Enough by Gail Steketee and Kerrin White. The more I read about OCD, the more hopeful I became that I would eventually get better.

Unfortunately, I had a difficult time finding a medication for OCD that didn’t cause initial side effects that I found intolerable. Prozac caused me to be very agitated and anxious, so I had to give up on taking it after a short while. In subsequent years, at different times I tried Anafranil, Zoloft, and Paxil, but those three medications caused me to be very disoriented and confused, so I was forced to give those up also after a short period of time.

Just when I thought I was never going to be able to tolerate any of the OCD medications, a friend with OCD told me to try Prozac in liquid form so that I could start taking it at a very tiny initial dose and very slowly increase the dose over a long period of time, which would enable me to gradually get used to the medication and hopefully avoid any bad side effects. It worked beautifully! It took me about four months to go from 1 mg/day to 60 mg/day Prozac, but once I got up to 60 mg/day and stayed at that dose for about five to six weeks, I really began to notice my OCD fading away. It felt like breaking out of prison! Once I got much better on the medication, I was then able to really dive into learning how to do ERP for my OCD. Prior to taking the Prozac, I had not been successful with ERP, because the OCD was too strong for me to fight through the anxiety. Once the medication successfully kicked in, then I started to make progress with ERP. The combination of medication and learning ERP brought me to almost complete recovery from my six years of severe OCD and depression.

Q. Both of your daughters have OCD as well. How did your own experience with the disorder help you recognize the symptoms and get them through it? Also, what would you tell someone who already knows they have OCD and worries they’ll pass it along to their children?

A. A lot of people with OCD worry that they shouldn’t have children, for fear that they will pass their OCD on to their children. This is certainly a possibility. But if you have OCD yourself and know the proper treatments for it, then you are the best possible person to recognize OCD in your child and to guide your child to the correct treatments. Because I knew what it was like to suffer from OCD (and recover from OCD), I knew what my two daughters needed when their OCD started to flare up when they were kids. I was able to recognize their OCD symptoms when they first appeared and promptly seek out the proper therapy and medication for them. They are now both in their 20s and are doing well.

Q. You’re doing well now. How do you keep on top of your symptoms? How long has it been since you really struggled with OCD?

A. I was very fortunate that both medication (Prozac) and ERP worked so well for me. Because Prozac made such a huge difference in my recovery, I have continued to take the 60 mg/day Prozac for more than 20 years now. I feel like the medication saved my life. I’m still so thankful for my recovery that I have never considered stopping the Prozac in all those years. (I’m fortunate that I don’t have any adverse side effects to the medication.) Because the Prozac continues to help and because I know how to use ERP whenever I get an OCD “urge,” I really have not struggled with OCD for about 20 years.

Once you learn how to use ERP correctly and effectively, you have the tools necessary to fight any OCD issues that come your way. Even if your OCD appears in a form that it has never taken before, once you know how ERP works and how to apply it, you can conquer any type of OCD that comes your way. Learning how to use ERP is hard work, but once you get the hang of it, it really works. I absolutely know that I’m much stronger than my OCD now, so I no longer have a fear of it tormenting me like it did in years past.

Q. How can someone with OCD join your support group?

A. Anyone can join my online “OCD-Support” group by sending a blank email to OCD-support-subscribe@yahoogroups.com. My group is not only for individuals with OCD but also any family members and friends of people with OCD, as well as treating professionals.

In addition to my large general OCD support group, there are many other well-moderated groups on YahooGroups for more specific OCD issues or groups of people, such as groups for Teens with OCD, Parents of Kids with OCD, Pure-Obsessional OCD, Scrupulosity, Compulsive Skinpicking, Parents of Teens and Young Adults with OCD, and many more.

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

A. Never lose hope that you can conquer your OCD. The evidence-based treatments (CBT/ERP and the OCD medications) really do work. Believe in them. Work hard at learning how to do ERP. Your persistence and hard work will pay off in the end. But never, ever lose hope. You really can get control of your OCD and return to living your life the way you want to live it.

Obsessive Christmas Disorder

By now you’ve probably heard of the controversy over a holiday sweater Target is carrying this season. It reads “OCD Obsessive Christmas Disorder.” On the surface, it’s “just a sweater.” At least that’s what people keep telling me. They’ve also told me it isn’t making fun of OCD, and that “compulsive” is a pretty key word to the whole term. Of course, I think “obsessive” and “disorder” are pretty key words as well, and they’re included on the shirt.

An alternative title to this blog post could be “When Advocacy Turns Ugly” because I’ve been getting some nasty tweets in response to the one I sent to Target on Tuesday:

Usually when I open Twitter I’ll have somewhere between two and five notifications. The morning after I sent this tweet I had 22. What?! I soon realized why: My tweet was included in a Mashable article about the issue.

I didn’t attack anyone or call anyone names, but you wouldn’t have guessed that from some of the responses. I’d include screen shots of them here, but so many of the people who initiated an argument with me ended up blocking me. Here’s a general sampling of quotes, though:

“THIS IS SOMETHING THAT ACTUALLY MATTERS. GET THE FUCK OVER IT.” (Alongside a photo of people protesting rape–for the record, I am against rape as well as the perpetuation of stigma and misinformation. Empathy is a superhero power I have.)
“She’s just doing this to get attention for her book. Take a seat.”
“If you can’t see the humor in anything — what a sad person you are.”
“We the people should not have to be forced to deal with your situation.” (Very presidential sounding!)
“This PC bullshit is out of control. JUST STOP!”
“Stop trivializing people who can separate reality from a sweater.”
“Just because you wrote a book does not mean you know everything.”

The last one is priceless because the person linked to an article written by my friend and fellow advocate Janet Singer, in which she noted how beneficial it can be to use humor as a coping method. Nowhere in the piece did Janet suggest that being made fun of is an effective therapeutic solution. Her point was that being able to laugh at oneself can be helpful.

Now this I laughed at! (Thanks, Janet, for defending me when I invited you into a less-than-fun conversation.)

The OCD community is pretty tight-knit, so in the future I’d do a little research before pitting us against one another.

In the midst of all of this, a reporter from KARE 11, the Minneapolis NBC affiliate, asked if I’d be interested in chatting about the topic. Since I’d already seen so many icky tweets I was nervous about more backlash, but of course I said yes to the interview. I won’t read the comments on the piece, so I don’t know if people are bashing my views or not. In this case ignorance is a little blissful, if not a means of self-preservation.

What I can’t believe about this whole social media war is how many people have told me I must not have a sense of humor because I didn’t find the sweater funny. I love to laugh! I love The Simpsons, Bob’s Burgers, Dumb and Dumber, Parks and Recreation, The Office — I’m not exactly highbrow. I probably joke too much, in fact. But OCD isn’t funny to me. Call me all the names you want — if you must — but it’s very difficult to see the humor in something so painful. My obsessions made me wish I were dead. When I was in my darkest, lowest points I thought there was no way out. The tremendous guilt I felt was overwhelming. Come up with a clever pun to make me laugh. If you’re my dog, chase your tail. You can even make fun of me! But don’t trivialize the single worst aspect of my life and tell me to get over it. And please don’t swear at me. Geesh. That’s just rude.

I may be thin-skinned, but I wouldn’t have it any other way. My empathy doesn’t begin and end with OCD. I will stand up for any marginalized group and won’t back down just because some mean people think I’m whining. Taking a stand is how we effect change. Pushing an unpopular opinion and being shouted down and harassed isn’t easy — but that doesn’t mean it isn’t right.

So, yes, this week has been strange. But the mean tweets were just a part of it. I also got wonderful notes and messages from people thanking me for working on their behalf. That’s who I do this type of thing for, others with OCD whose voice isn’t quite out there yet, for whatever reason. I can’t speak for everyone, but I will voice my opinion in the hopes that it will bring about change for all of us.

Learning to Live with Obsessive-Compulsive Disorder

Have you heard of the Health Stories Project? It’s a wonderful resource I recently learned about when they asked to interview me about my experience with OCD. They made me feel completely at ease, and I didn’t feel at all like they thought my admittedly terrible obsessions made me terrible.

Consider joining their community for support from others. I’ve joined!

Sharing Your “OCD Story” During #OCDWeek

Last week I explained why sharing my own OCD story is so important to me. I hope you’ll consider sharing yours as well, at least on a small scale. Doing so doesn’t mean you have to bare your soul — unless you’re ready to. Together we can change the world!

Tuesday Q&A: Renae Reinardy

As some of you may know, I’m president of my local chapter of the International OCD Foundation (IOCDF), OCD Twin Cities. But I didn’t found the affiliate — today’s guest Renae Reinardy did. She and her co-founder Randy Herrera did all the hard work to get the nonprofit up and running, and I took over two years ago after Renae moved to Fargo, North Dakota, where she has her own practice, Lakeside Center for Behavioral Change.

Renae is expert in the treatment of OCD and related disorders, including hoarding — she appeared on the the A&E series Hoarders and produced a documentary called Information About Compulsive Hoarding. Thanks for joining us, Renae!

Q. We were introduced when I took over as president of OCD Twin Cities. I had some big shoes to fill! Why did you decide to start the affiliate here, and how did the whole process work?

A. Randy approached me and said he would like to start an affiliate and would like my help. I was totally swamped in my office, but knew how important it was to have this resource so we worked hard and quickly to get the affiliate off the ground. We were happy to have everything in place by the IOCDF conference that was held in Minneapolis. I loved being a part of the affiliate and we had some wonderful events and fantastic volunteers.

Q. What do you consider your biggest success with OCD Twin Cities?

A. Some of the highlights were the golf tournament fundraiser, sponsoring two therapists to attend the Behavioral Training Institute, donations to children at Rogers Memorial Hospital from Build a Bear, support group awareness, and our quarterly meetings.

Q. You treat OCD and related disorders, including hoarding. In the last revision of the Diagnostic Statistical Manual (DSM), hoarding was changed from a symptom of OCD to a disorder under its own category. What do you think about that change? 

A. It is wonderful to see hoarding disorder in the DSM-V. This validates millions of people’s experience with this disorder by giving it an official title (even if people don’t like the term “hoarding”). It also means that more research can be done in this area. Hoarding is a complex behavior that comes in many varieties. Co-morbid conditions really influence the approach that a therapist should take in treatment. Hoarding can be exacerbated by depression, ADD/ADHD, trauma, eating disorders, dementia, and/or OCD. Hoarding and OCD are different conditions but do share some common features.

Q. What is the best line of treatment for hoarding?

A. Treatment varies depending on the symptoms that the person is experiencing. A client who has hoarding and trauma will have a very different treatment plan than someone with hoarding and ADHD. When compulsive acquisition is a factor, we will talk about non-acquiring exercises such as non-shopping sprees. Treatment commonly includes cognitive restructuring, exposure to discarding, improving decision-making skills, and replacement behaviors.

Q. You also treat dermatillomania (skin picking) and trichotillomania (hair pulling), both compulsive behaviors that go beyond messing with a pimple or tweezing stray hairs. How common are these disorders? How are they treated–and do you use similar techniques for both?

A. Hair pulling and skin picking are very common conditions. They fall under an umbrella titled body-focused repetitive behaviors, which also includes nail biting. Everyone picks, pulls, or bites skin, hair, or nails at some point, but when these behaviors become out of control and damage results then it becomes a clinical issue. There are many skills available to help people with these conditions. I also wrote this article that discusses treatment.

Q. You invented Courage Critters to help children face their fears. How do Courage Critters work–and why is it so important that parents and caregivers encourage kids not to back down from their fears?

A. The mission of Courage Critters is to Empower, Support, Protect and Love children who are experiencing fear or body-focused repetitive behaviors. Through the website, children can begin to learn lifelong skills to help them confront fears rather than engage in avoidance or non-adaptive coping behaviors.

On the website, children and caregivers will find a section called Fear Busting Tools. Under this section, there are several tabs that describe the skills offered as part of the Courage Club. The Standing Up to Your Fear Bully Plan tab will help children to identify their fear bully and the impact it has on their behaviors. There will be questions to help guide caregivers through this process to really know how fear impacts the child. Once we know what we are dealing with, then we will develop a plan to gradually stand up to the fear bully. This is where children grow some huge emotional muscles! Fear is measured with a fear thermometer and children and their caregivers make small goals to gradually change behavior. There is an example of how to set up this plan under the tab, Example: Standing Up to Your Fear Bully Plan.

The Good Coach Thinking tab will show consumers how to identify the “fear bully talk” inside of the child’s head. When we know what the fear bully is telling us, we can start to challenge and change those thoughts into “good coach thinking.” There are a series of short questions to help children identify, challenge and change unhelpful thoughts. The tab, Example: Good Coach Thinking can show consumers how to use this skill.

Relaxation is another really important skill that can be practiced. There are many relaxation tools that can help our mind and body become calm. Caregivers and children will find an example of one under the tab, Relaxing Breath.

Through the use of these skills children feel more confident, courageous and ready to take on their fear bully. Having a tough-looking little green sidekick doesn’t hurt either.

Q. Can all children benefit from Courage Critters and its coping methods, or is it especially helpful for kids with a disorder like OCD?

A. The Courage Critters program is a tool that parents, caregivers, teachers, doctors, and children can use as a guide to decrease common childhood fears and body-focused behaviors. The Courage Critter will provide the child with comfort while this website offers a fun, and interactive program. As a member of the Courage Club consumers will be able to access all pages on the Courage Critters website. Many children struggle with common childhood fears every day. Fears of the dark, storms, medical procedures, and new places are just a few examples of common fear triggers. Childhood fears are amplified by a child’s imagination and difficulty distinguishing reality from fantasy. Courage Critters helps a child to use their imagination skills to empower, support and protect them in situations that cause many of these common childhood fears. This can be especially helpful for children with OCD and related conditions. Courage Critters also aims to help children with Body Focused Repetitive Behaviors (BFRBs). There are many behaviors that fall under the category of BFRBs. Some of the most common include nail biting, skin picking and hair pulling. These behaviors affect millions of people, but most kids who have a BFRB feel very alone. The Courage Critters program lets them know that they are not alone and that there are many useful skills that can be utilized to decrease unwanted behaviors.

Q. You’ve lived in large metropolitan areas, and you currently live in Fargo, North Dakota, which is bigger than many people realize. But there are several small towns and farming communities in the surrounding area, both in Minnesota and North Dakota. What advice do you have for people who live in more remote rural areas with minimal access to proper OCD treatment?

A. Many of my North Dakota clients drive long distances for therapy. Although, this was still the case when I practiced just outside of Washington DC. Access to treatment remains a challenge for many, but it is getting better. It is great to support organizations like the IOCDF and your local affiliates. Raise awareness of these conditions by providing information to your doctors. There is training and supervision available for therapists who are interested in learning more about OCD and related conditions. Some therapists offer video conferencing or phone sessions to clients who do not have anyone in their area. You can find a therapist in your area by visiting iocdf.org.

Q. What tips do you have for preventing relapse? Is some degree of relapse inevitable?

A. It is important for clients to really understand how to do exposure and response prevention with all of the manifestations their OCD may take. As a therapist, I go from being a teacher to a consultant with my clients. I want them to know the necessary skills to keep moving forward. It is good to keep on eye on symptoms and use all of their tools to keep symptoms from returning. When symptoms are caught early, it is unlikely for them to grow to the point of being unmanageable. Keep being honest with yourself and call your provider if you notice that you may need a “tune-up.”

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

A. Think of your OCD as a third grade bully. You cannot reason with it, or convince it of factual information. The best way to stand up to this bully is through exposure exercises to desensitize to the bully. This allows the internal heckling to move to the background, lose power, and eventually go away. For many of my clients the goal is to decrease OCD bully talk, behaviors, and sensations to less than 10 percent. Do your ERP skills and have a structured hierarchy to gradually stand up to your fears. You cannot train for a marathon in a day; it can also take a little while to build your emotional muscles to stand up to OCD. Fortunately, it gets easier as you go, and this is a battle you can win. Find the right amount of support on your journey.

A Roundup of Advice

I tailor my Tuesday Q&A questions to my subject, but there’s one question I always ask: “If you could give just one piece of advice to someone with OCD, what would it be?” Here’s a roundup of every piece of advice — so far.

“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.” Lee Baer

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

“The best advice I would have to give out would be to remind yourself that OCD just wants power, it likes to lie and take over. Don’t let it — use mindfulness and grounding techniques to get by, take your thoughts, emotions, and feelings with you wherever you go, sit with them, and continue on. At the end of the day it doesn’t matter how you felt, but how you lived. And there is help and there is hope!” Jessica Bishop

“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.” Rose Bretecher

“Reach out, don’t turn inwards. You are not the only person who has felt the way you feel, you are not the only person in the world who has thought the terrible things you have thought. There are people who know exactly what you are going through and people who want to help. It is only by coming together that we realize we are not alone. OCD is such an isolating disorder that’s what it wants to do, it wants us to think we are depraved and disgusting and alone. The truth is we are not. We have a mental disorder. A mental disorder is nothing to be ashamed of any more than diabetes or cancer is. You are not alone…someone cares.” Julie Burnfield

“Don’t give up, there’s hope. When it seems that getting better is impossible, believe that it is possible, because it is.” Jenn Coward

“Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.” Jon Hershfield

“Just one piece! That is hard! My advice to those with OCD is that recovery is possible for anyone — you are not an exception! But recovery does not come without some really difficult work. Make the commitment to ERP and trust the process!” Chrissie Hodges

“Learn as much about it as you can! Once you have context, you can better navigate what’s happening. I keep an OCD file on my phone where I store tips, quotes — anything that I can quickly access and remind myself of when I feel like I’m going under. One of my favorites is from Jon Hershfield, ‘If OCD thoughts are loud, the options are to accept their loudness or try to turn them up and blow out the speakers.’ But I can’t stop at one! Tip two: Connect with others who have OCD at your own pace, whether it’s an anonymous online group or a support group in your hometown. Peer support is special and dear to my heart.” Melanie Lefebvre

“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.” Clint Malarchuk

“You are not alone, you don’t have to suffer in silence, and help is available. With the appropriate treatment (ERP or ERP and medication) you can gain control of your OCD and learn to manage your illness. Treatment is number one always, but the second thing I recommend is to meet someone else who lives with OCD. You can do this through the International OCD Foundation’s conference, support groups, or online groups. Understanding that there is help available and that you aren’t alone are in my opinion the two most important things to help you gain control of your OCD. Lastly, I would recommend giving back when and if you are ready. I have found some of my greatest healing has come from sharing my story and helping others in need with OCD or a mental illness.” Elizabeth McIngvale

“Never, ever give up. You can take your life back from OCD.” Shala Nicely

“Don’t base the decisions you make in your life on what your OCD wants. It is your life; base your decisions on what you want.” Carol Rettner

“My doctor told me that it was possible to get better. I believed him. I saw this as hope. It became my beacon and lifted me when I was struggling mightily, particularly when I was at my lowest. So believe with all your heart that it is possible to get better. Let hope be your beacon. Stay in the fight.” Shannon Shy

“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.” Janet Singer

“Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug.” Ethan S. Smith

“ERP, ERP, ERP!” Jackie Lea Sommers

“I would suggest seeking help in the first place. Of course I mean specialized help (CBT/ERP therapy). Secondly, it is important that people suffering from OCD understand that they are not their disorder. OCD is not a personality trait, not even a personality disorder. We need to dis-identify from our symptoms and focus on our CBT/ERP treatment. I would also encourage OCD sufferers to talk about their disorder. There is nothing to be ashamed of or feel embarrassed about. As I said, our symptoms do not define our identity. One way of breaking stigma is letting people know about our OCD instead of trying to hide its manifestations.In sum, OCD can be treated, sufferers can actually get better and enjoy more functional lives. There is no need to hide; in fact, the more we talk about our OCD the less OCD will speak for us.” Ro Vitale

Tuesday Q&A: Margaret Sisson

Many of us in the OCD advocacy community got into it because we have OCD ourselves. Margaret Sisson became an advocate because her son Riley had OCD. She has done so much to spread awareness, not just about OCD but addiction as well. Even after Riley’s tragic death in 2014 Margaret has continued to go above and beyond and advocate for people with OCD, and her goal is to keep Riley’s legacy alive–she founded Riley’s Wish Foundation and presented on his behalf at the OCD Conference in Boston.

As much as Riley struggled with both OCD and addiction, he never stopped trying to educate others. He presented on several panels at the OCD Conference and he was working toward his Master’s degree in counseling. Riley was hilarious. OCD is hard. It’s draining. It’s depressing. Somehow Riley was able to joke through much of that pain and made others laugh.

Thanks, Margaret, for continuing to be a voice for Riley, and for us.

Q. You were given the IOCDF Hero Award at the 2014 OCD Conference. Much of the work you were doing in the OCD community was on behalf of your son Riley, who had OCD. How did you decide to get involved in advocacy?

A. When Riley and I went for the first time to the conference in Chicago we both felt we found support, and for once others understood! I decided that by helping and being an advocate, I not only helped others but also Riley. I was very humbled to receive the Hero Award. Most importantly, I was able to tell Riley that it was for him! He was my hero!

Q. It must have been painful to see your child suffer through this illness, and to hear some of the unpleasant details, including those about his addiction. How did you push past the pain in order to help Riley?

A. Watching your child suffer is very difficult no matter how old they are. But the more I educated myself and researched OCD the more I felt I could help him. I needed to understand what he was going through, and that way I was more equipped to get him to the right treatment.

Q. I think it must be challenging for parents to help young adult children who are striking out on their own and becoming more independent, and perhaps more resistant to parental guidance.

A. It is hard to help an adult child with OCD. You are encouraging independence but oftentimes that is hard because of their struggles. My advice for any parent whose adult child is going off to college or living independently is setting up a good support team. Colleges are starting to implement programs that help students who struggle with mental health and addiction. The programs are designed to be a community for students and they provide the peer support and accountability necessary to enable sustained recovery and mental health counseling. This gives the students the ability to pursue an academic and social experience in higher education. The program also provides support and encouragement to give back to the community.

Q. Riley self-medicated, and unfortunately he became addicted, leading to a dual diagnosis of OCD and addiction. How did the diagnoses affect each other, and how did you and Riley approach the dual diagnosis?

A. Unfortunately, when struggling with substance abuse it became a vicious cycle. Treat one and the other goes untreated and so on. Fortunately, residential facilities are now implementing treatment together. Let me share information from Riley’s presentation on OCD and addiction at the 2014 OCD Conference:

“Substance use disorders (SUDs) are categorized by the dysfunctional use of a substance causing significant impairment in functionality or marked distress. SUDs generally include cravings in between instances of using, obsessions around wanting to use, and the compulsive ingesting of substances. The diagnostic criteria for SUDs, as outlined in the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV), are separated into categories of abuse and dependence depending on the presence of withdrawal symptoms when substance(s) are absent from the body (4th ed.; DSM-IV; American Psychiatric Association, 1994).

Both OCD and SUDs involve obsessions and compulsions. OCD can manifest in a variety of ways. With OCD, obsessions generally coincide with the fear that something bad will happen if compulsions are not carried out. With SUDs, triggers can include emotions, cognitive distortions, false beliefs, and other people, places, and things. Addicts/alcoholics generally obsess about using. With SUDs, rituals include finding ways to use, using, and preparing to use again. With OCD, rituals can include a variety of behaviors and thoughts. Using drugs and/or alcohol can be one of them.

Those with obsessive-compulsive disorder often know that their obsessions and compulsions are not based in reality. They often know that what they’re doing isn’t realistic, that it doesn’t make sense. They often see a decline in functioning, they’re aware of the time they are wasting, and they experience distress. However, they still continue to obsess and carry out the associated compulsions.

Those with SUDs are not so different. Addicts/alcoholics often see the negative consequences associated with their use, and they know the high isn’t worth it. They see clear indications of dysfunction, physical illness, distress, etc. However, they too struggle to stop themselves without help. Many scholars have collected data indicating a strong positive correlation between OCD and SUDs.”

Q. How old was Riley when he was diagnosed with OCD? How did you realize that OCD might be behind his symptoms? Once you knew it was OCD how did you go about treating it?

A. Riley was diagnosed with OCD when he was 12. My dad was a pediatrician and he actually diagnosed him after I explained his symptoms. It started with hand washing and extreme anxiety over school. The unfortunate part was he spent years receiving the wrong therapy. Talk therapy was all he received for over five years. Not until his senior year did we finally find a therapist who was experienced in ERP. I think that is so important for parents to find the right therapy. The IOCDF is a great resource for families.

Q. Let’s say someone reading my blog also has a dual diagnosis of OCD and addiction and hasn’t told her parents about either illness. How should she approach the topic with them?

A. This is what I would like to concentrate on through Riley’s Wish Foundation. I want to continue raising awareness and educating others about OCD and addiction. I think we made great headway at the IOCDF conference this year. I was fortunate enough to speak on three panels that discussed OCD and addiction and was so encouraged with the feedback we received. The plan would be to set up a mini track for next year’s conference that continued discussing the dual diagnosis and how best we can help those who struggle with the dual diagnosis.

Q. I met you and Riley at the 2014 conference in L.A., and he was a hoot! I was practically in tears when he presented at a panel about preventing relapse; I was cracking up. I was shocked when I learned of his death less than two months later. Your life was turned upside down, but you have been determined to carry on Riley’s legacy and help others in need. You started a Facebook page called Riley’s Wish, you presented at many sessions at this year’s conference in Boston, and now you’ve officially launched Riley’s Wish Foundation. How can others get involved to help spread Riley’s legacy or advocate?

A. I think being an advocate is a real personal decision. Some people are not comfortable telling their own story and that is OK! Being an advocate can also be getting involved with your local affiliate, starting a support group, or getting involved with the IOCDF conference. The conference was life changing for both Riley and myself. I will never forget the support we received at our first conference. After that, Riley and I both felt compelled to help. Riley started the first OCD/addiction support group with Jared Kant. The next year he did his own panel with several of the top doctors. He started the movement to talk about OCD and addiction. He wanted so much to figure out how to help himself so he could go out and help others. I feel that is what I’m supposed to help with now. That way I can honor Riley’s legacy and help others. I think he would be pleased.

Q. If you could share just one piece of advice with parents whose children have OCD, what would it be?

A. Educate yourself. The better you understand OCD the more equipped you will be to help. Educate yourself about ERP and the ongoing research on OCD. As a parent, you are your child’s best advocate! And some personal advice: Humor and laughter are good medicine, too. Riley would be the first to tell you that!