The hubby and I are in the back yard having a moment alone when we notice Michael and Blake coming out the door. Their faces look purposeful. Michael’s looks gleeful.
“Mom, Dad – We’re moving!”
We’re not suprised by the announcement. The two have already been talking for over a week about driving across country, getting an apartment for a few months, and creating a small social bubble with a couple of friends Michael went to college with. It’s been an uncertain time for two young adults living in a pandemic. Job opportunities have been sparse for Michael (a recent college grad). What he can find he is way over-qualified for. They’ve both felt isolated. Fears have abounded: Will we ever find work? Maybe we’ll never have relationships or families of our own. What is our future?
Michael has also been worried about his brother. He sees him frequently stuck at home, sleeping way too much, struggling with a view of the world that lacks joy. He thinks time away is just what his brother needs. And one more thing: he adores Blake.
“There is no one else in the world I can better imagine doing this with,” he tells his brother.
Blake is uncertain. He worries about the money it will cost. He worries he won’t finish the book he’s about thirty pages from completing. He worries he won’t like living nearly two thousand miles from home. Nevertheless, he agrees to go – and he almost instantly regrets the decision. But OCD has made him a man of his word. If he makes a commitment, there is no gray. There’s no re-evaluation, no backing out.
“Please? I want to come with you.”
On a Sunday morning, almost two weeks ago, they leave our driveway in a car their grandmother has lent them. One of our dogs repeatedly tries to stow away with them, but he doesn’t succeed. Two pieces of my heart drive away. I’m happy and I’m sad.
The photographs from the road tell an adventurous story. Two brothers on the road together. The phone call when they arrive at their new apartment reveals that Blake has been nauseated since he left. Anxiety has taken over. He immediately is offered a job at a book store, which he takes. It’s his first “real” job. His nausea does not abate. His mind is a storm of unwanted thoughts.
Michael, awash in pride over having single-handedly installing wifi in their new place, is an incredible source of support for his brother, even as he deals with the reality that moving across the country is not as romantic in reality as it is in fantasy (friends aren’t as available as they promised they’d be; many hours are spent pacing the apartment floor, jobs are still difficult to come by). He drives his brother to and from his new job. He buys him ice cream to settle his stomach.
Blake wonders if he’ll last the three months he committed to. So does Michael. The hubby and I remind them that doing new things is hard, and to stay focused on the moment. One moment at a time. One hard thing at a time.
It’s a big week upcoming for OCD! Saturday, October 10, is not only World Mental Health Day, it is the Virtual 1 Million Steps 4 OCD Walk. Usually the walk is a live event that takes place in various places around the world. Groups meet and participate in activities along with the walk. This year, people will walk on their own and, perhaps, participate in activities virtually. Yours truly has her own shirt and will be walking with the hubby around our neighborhood.
OCD Awareness Week activities with the International OCD Foundation
Then, Sunday, October 11, OCD Awareness Week begins. Above, I’ve posted a photo from the International OCD Foundation. It shows a variety of activities going on during the week to raise awareness about OCD. Have OCD, or a loved one or friend with OCD? Check out an activity and share with others.
When I first began to prepare my practice for the possibility of a pandemic, I failed to imagine the potential impact on my own emotional well-being.
In February, I heard the murmurs. On the fringes of my OCD support group some members were talking about their “novel coronavirus” fears. I chalked it up to OCD playing its tricks. Surely we had nothing to fear from this faraway virus. In early March, I shared with patients my plan to go virtual if the virus made it necessary to close my office. I never imagined I’d actually be doing it, but the American Psychological Association had recommended that psychologists have a plan. I’m a rule follower and it seemed prudent, so I made a plan. Just over a week later, I saw my last patient in the office and was fully a telehealth provider by the next day. Five months later, I’m still providing OCD and anxiety disorder treatment from a little corner in my home.
“So, what’s the big deal?” one might wonder. Indeed, I am lucky – blessed even. I’m in a career where I can work from home, as long as I have a secure internet connection and a private space. And, hey, research demonstrates that OCD treatment via telehealth can be very successful. I’m luckier still that I already did some of my work via secure video, seeing patients who didn’t have an OCD/anxiety disorder specialist in their corner of the world (actually, not the world – just their corner of the state I’m licensed in, but I digress). I didn’t have to make the switch to telehealth overnight without previous experience or training. Great, right? Grab the morning coffee and head to the office in the corner. No commute.
Sure, there’s the adjustment to the new working setting and the unintended consequences of that shift (can everyone say “chronic pain from poor ergonomics?”). That part, I’m dealing with. The unexpected part, the part I think the mental health provider community is going to be dealing with for an unforeseen amount of time, is the unprecendented demand – and the long term toll on our well-being. You see, here’s what happened: my state went into shelter-at-home. Most of my patients stayed in treatment; a few decided to take a break and wait things out. There were crickets – silence – where there used to be new referrals. My free support group went virtual and saw better attendance than ever – with the same faithful attendees. We fumbled through this together. Many of my OCD patients seemed better prepared than most to deal with the newly-named COVID-19, their skills at coping with uncertainty being an asset. All in all, it was relatively quiet, minus the shifting and adjustment. It was actually eerily quiet – for a bit. Maybe I should’ve taken note of what happens before a tsunami – the drawback of water from the shore before the deluge.
An Emotional Toll
It started with patients who were on an “as-needed only” basis requesting to come back in for regular sessions. The stress of the ongoing isolation and the unknowns taxing their coping skills (as I write this, on a weekend morning, yet another of these has called asking to come back). Then those who’d taken a break mid-treatment during the shutdown wanted to return. And then came the new referrals, people who I’d never seen before, calling and pleading for help. Struggles with their mental health that had been manageable before were overwhelming them now. It continued until my practice was bursting at the seams, until I just could not fit anyone anywhere else.
My support group went similarly. In non-COVID times, one or two new inquiries in a month was a lot. I began to see one a week, then a few a week, then eight in four days. I couldn’t keep up with screening the new referrals. I wondered if the group and its community feel could withstand the constant flow of new attendees. I started to feel burned out.
I’m normally known as the therapist who connects people with therapists (“Call Dr. Angie. She’ll be able to help you find someone good.”). I don’t like to hear that a person in distress has been unable to find a mental health professional who can see them. I listen to them. I find out their needs and I take it upon myself to find at least a few therapists in my network who are open and ready for their call. In recent weeks, I grew weary of the constant need. I took a step I’ve never taken before in my nearly two-and-a-half decades in private practice. A week ago, I changed my voice recording: “I am unable to return calls from new referrals.” It kind of devastated me to do that. The group followed on its heels two days ago. Now a message about my group reads, “This group is currently not accepting new members. Please check back in the future.”
It feels like I’ve been in a shipwreck. People all around me are drowning – or at least feel they are. They see me as the stronger swimmer – the one who can bring them to safety. They reach out with their hands. Their voices beseech me to help them. But there are endless numbers of them. I can’t see them all, but I can hear them. What they don’t realize is that on top of reaching out and pulling person after person to safety, I’m in the water, too. And I’m swimming and dog paddling as best as I can – and I’m getting exhausted. But, still, they call out. I want to help them all. I don’t want to watch anyone drown. But if I keep going, I may drown myself. I feel beyond torn. What choice do I make? Save one more? Rest, so I can help more in the future? And if I do rest, how long will I be haunted by the sounds of drowning voices, pleading to be rescued?
Looking After Our Mental Health Providers
I’ve come to believe that my experience is not at all unusual among my colleagues. I frequently see shared experiences of being “exhausted” and “burnt out.” Our practices are brimming with need. Many of those who come to see us have reduced or, increasingly, limited ability to pay us. We are in this field to help. It flows through our veins like our lifeblood. We respond to those who are struggling. But now we are struggling, too.
In the past, a mental health professional experiencing exhaustion, overwhelm, or burnout would pull back, take care of themself, perhaps even see a mental health provider. But now our fellow mental health providers are coping with the same situation. We’re all in this pandemic together. We are all being called upon to do more. We’ve been asked to see first responders who are coping with the distress of caring for the ill. I’d venture to say that we are the forgotten first responders, the ones for whom the flow of the affected is not letting up. Not now. Not in the foreseeable future. And I am fearful of what may become of mental health if our professionals stay on the current path, veering ever-closer to mass burnout.
I do not have answers; just thoughts about the direction we might go in. I know that I cannot help every single person in need right now. If I’m to go on to help more people, I’m going to have to step back and do what is necessary to build my own emotional strength back up. A mental health provider is ethically bound to step back when they see their own emotional health suffering. We must be in a good place to help our patients get to a better one than they are in.
To my fellow mental health providers: I see you out there. I know your level of caring and dedication. I know the need out there calls to you. The need will far outlast the physical distancing measures. Just remember that you are needed in as healthy a place as you can be in. It’s not a case of “better to give compromised mental health services than no services at all.”
It’s been suggested that the medical community look at this pandemic as a marathon, not a sprint. I suggest mental health providers look at it as something else – a relay race, perhaps. None of us can marathon forever, but maybe, just maybe, if we can keep passing the baton to one another, and give each other a break – even reach out to one another for reprieve and support – we can go the distance. For sure, we will have stories to tell, and regrets of what we could not do, but the work we do is far too important for us all to burn out at once. Obviously, I wrote this because I am struggling. Now to take my own advice.
*This is not meant to be advice; it is simply something I’m learning as our family navigates having a family member with suicidal ideation. If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
The hubby and I began participating in therapy with a specialist from a suicide prevention center just a few weeks ago. Our son, Blake, had been sharing a good deal of suicidal thoughts with us and, since he was not interested in any ongoing treatment, we recognized we needed support ourselves. So far, we’ve done an intake meeting and two sessions. Although I’m a psychologist who specializes in treating anxiety and OCD, it’s a completely different story being a patient. I am learning, for sure, so I thought I’d share three nuggets I’ve gotten so far:
1. It’s not necessarily a bad thing that someone is talking about suicide.
Emphasis here is on “talking.” It was terrifying to me when Blake shared the thoughts that go through his mind, how much he suffers, how much he thinks of dying. I became alarmed at the very presence of these thoughts. However, our therapist (and others) have told me that it is actually a positive thing that Blake is talking about his thoughts. Talking and sharing are attempts to reach out and connect with others. This is a better thing than keeping these thoughts all to oneself – and not connecting with others.
2. It’s important to listen, not try to problem solve.
Many times when Blake has shared his pain with us, the hubby and I have worked to problem solve with him about ways to cope. We’ve also tried to shine a light on the bright side of things that he may be overlooking. What I’ve learned is that the most important thing I can do when my son shares his thoughts and feelings – even though they contain very dark and frightening content – is to listen and accept them as his. It is not my job to problem solve. That’s not where he’s at; he’s in sharing mode and he simply wants to be heard. As far as pointing out the bright side, our therapist noted that, for someone who is not ready for that, it’s kind of like shining a light in the eyes of someone who has been sitting in the dark. It’s going to be jarring and unappreciated. So, I’ve been working on listening and simply hearing.
3. An increasing number of conversations about suicidal ideation does not necessarily mean the person is about to act.
In our last session, I noted to our therapist that the freqency of conversations seemed to be going up. Our son was having more conversations with us about his pain and his thoughts of death. He wasn’t sharing intent to act, he was just sharing more often. It was emotionally exhausting, at times, and I was concerned what it meant. The therapist reminded me that we’ve shifted our conversations from problem-solving and pointing out the bright side to actually just listening and accepting. She noted that the increased frequency may simply mean it’s become more safe to share and that, when a person feels like they will be heard, they’ll take the opportunity to talk more often about what may be going on in their head. So, although it feels scary to me to be hearing my son’s thoughts more, it may just be that he feels more accepted in voicing them now than he did in the past.
We still have a way to go on this journey, and we have to listen to our son to ensure we are not missing signs of intent to harm himself. On the way, I am learning, and I hope our experience can help others.
*If you are thinking about suicide or have a loved one who is struggling with thoughts of suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 (In the United States. In other countries, please reach out to a similar service in your country).
Blake casually drops this line as he and I sit lazily on the patio chairs and cushions in our yard. I do everything in my power to keep myself from reacting too strongly. I want to encourage him to keep talking, not shut him up with my own anxiety.
“You did?” I ask. “When was that?”
“Saturday night. I just couldn’t sleep. I couldn’t stop thinking about what a failure I am and I thought, ‘Maybe I’ll check this out.’ Honestly, I expected it to be a waste of time, but I’m actually glad I called.”
“I’m so glad to hear you called,” I say. “You must have been feeling pretty awful to reach out.”
“Yeah. I tried the text line first. But there were a lot of people ahead of me. I waited over half an hour. I decided I’d try the actual phone line because the service suggested it as an option. I thought I’d wait even longer, but there was someone on the phone with me in about three minutes.”
He pauses a bit, then he continues, “I thought it would feel stupid, but I have to say, it felt so good to tell a stranger how awful I feel. I told them about stuff that I’ve never told anyone else. I felt like what I’m so upset over is so petty, but the person on the other end of the line said, ‘That sounds so hard.’ It felt so good to hear that.”
We go on to talk about more of the particulars. My young adult son shares how he struggles to decide if he should live or if he should die. I tell him how courageous he is for reaching out, and for being honest with me now. But afterward I am hurting so much. I want to cry and feel the relief of deep, cleansing sobs, but the tears won’t come.
It’s well after midnight and my husband is asleep. I turn to the internet. I’m not sure what I’m looking for, but my son (my beautiful son) – the one I carried when he cried as an infant, explored the world with, delighted in each new step he took, soothed through huge spikes of anxiety and OCD triggers, and championed through his many brave steps – frequently feels that his life is not worth living and that he is not worth the effort of saving. I’m looking for something to help me help him see that it IS worth it. I feel desperation…and then I realize – it’s not my choice to make. It is his life and I cannot coax, cajole, or convince him to stay here. It is selfish of me to do so because, while I’m thinking of him, moreso I’m thinking of my own pain.
And that is when I realize that I am the one who needs help. I have to take care of me right now. It’s not about saving him. Yes, he could use help and support when he chooses it. But right now it’s about taking care of me so that I can live with a family member who I love fiercely and who is frequently contemplating suicide. That is a lot to navigate alone and, until now, I’ve pretty much done just that.
Maybe it’s because I’m a psychologist and I think I’m supposed to know how to handle suicidal thoughts, but I suspect that it is also about being a mom. As parents, we are supposed to take care of our children. We worry about them from the moment they are conceived until we draw our last breath. When they struggle, we look to get them help. We forget that we must be in good shape to be a support.
The next day, I call the suicide hotline myself. It had never occured to me that I could call the hotline as the parent of someone who was dealing with thoughts of suicide. As much as it sucked to make that call, it felt so good to be heard and held by another. That call led me to reach out to a suicide prevention center and today, in less than an hour, I will have my first consultation session with a specialist. It’s not for Blake. It’s for me – so I can learn how to take care of myself. I’m nervously optimistic. I’ve lived with my son’s suicidal thoughts for so long, never considering how I was doing. Let’s see where this journey leads.
This blog will be seven years old in July of this year. When I began writing it, Blake was a 14-year-old who was tortured by his own thoughts, but refused treament for his Obsessive-Compulsive Disorder (OCD). I was a terrified mom, one who struggled to stay out of her son’s compulsions, despite being a psychologist who specialized in treating OCD, and who should have known better. In three months, Blake will be a 21-year-old man – one who has grown tremendously over the years. As for me, I hope I’ve grown as well. Now, as the world struggles with fear and uncertainty and our family practices physical distancing to do our part during a pandemic, I am reflecting on where we are.
My blog began with a post titled, “We Are Here.” I was in despair and fear when I wrote it. I didn’t know where our journey would take us, but I did always have hope (though sometimes it was barely holding on). Over the years, there have been ups and downs. At first, Blake’s OCD was a constant in our lives. There were arguments with his brother, tears for each of us, and family events lost. There were also small triumphs. Then, the rituals went mostly underground and depression took center stage. Though Blake went off to college at 19, he came home at the conclusion of his first semester after spending much of it in bed and losing so much weight I barely recognized him. Through it all, Blake did not want to talk about OCD.
Lately, though, something is changing. Blake has been sharing his inner world more and more. He’s been spending his time writing. He’s been working on a fiction novel (it’s at just over 200 pages as I write this post), and he has been writing for an online gaming news site. The writing has been incredibly challenging – the novel in particular.
“My mind,” he told me one day the other week, “it never stops. I keep thinking ‘what if this’ and ‘what if that.’ It loops into so many things. I think about why I’m not a good person, or what if I’d been born into a different family – whatever it is, I just can’t stop it. It can go on the whole day. It’s why I like to sleep. It’s the only time I get a break from my thoughts.” He shares that even his movements are dictated by OCD – they are subtle, but even walking must be done according to rules.
“Thank you for sharing that with me, honey. You’ve given me a window into what it’s like to be you,” I answered, realizing that my son’s OCD never really took a vacation. It morphed into mental rituals – tricks and contortions he must do in his head until his brain finally feels satisfied for just a brief moment. I realize it is a true feat that he’s written so much of his novel thus far. And it is GOOD STUFF – really good.
Earlier today, there was another “a-ha moment.” Blake finished a volunteer shift at the local food pantry, came home and wrote a quick gaming article, and then disappeared. I found him a couple hours later fast asleep in his room. I coaxed him out of bed and into the family room.
As he became less groggy, he shared that he’d gone to sleep because of thoughts that he wouldn’t hit his writing goal for the day in the time he had. “I was afraid and I couldn’t get out of my head,” he said.
“Well,” I said, “maybe it’s time to face that fear and start writing.” A short time later he did and soon thereafter he called to me.
“You know what, Mom? Earlier, I didn’t write because I was afraid. Now, at the rate that it’s actually going, I realize I would have written even more than I expected in the time that I had. Ironically, it’s my fear that got in my way – giving in to my fear may have prevented me from reaching my goal.”
In my mind, that was a wise observation. It wasn’t ability or creativity that held Blake back – only his own fear. By listening to his fear instead of to what was important to him, he was held back from his goal. It made me think of a quote I’d heard long ago by Franklin D. Roosevelt. It turns out it was from his inagural address in 1933, at a time when the United States – and the world, for that matter – was in the depths of a depression and faced much uncertainty. I’ll conclude this post with that quote. I think it rings true for Blake’s recognition today and, perhaps, for all of us as we face our own challenges in the form of COVID-19.
“...the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.“
Like just about everybody else, our family is staying at home as much as possible right now. I’ve completely moved my OCD and anxiety psychotherapy practice to telehealth, so I’m home almost all the time now (exceptions being to get groceries, and to walk around the neighborhood after sitting all day and forgetting to even go to the bathroom between patients). The hubby works in an essential industry so he still has to go in to work. Michael has seen all his plans, including work, go bust. He and Blake have a commitment to volunteering at the local food pantry, which seems to need them more than ever at this time.
The hubby and I are taking advantage of this unprecedented time with our young adult kids by watching family movies, playing games, and taking turns making meals for one another. We’ve always eaten dinner together as a family. It’s just different knowing they’ll be here for dinner every night.
Last evening, as we sat around the kitchen table, considering the news of the day, Blake suddenly became bright and animated.
“I’ve been a germaphobe my whole life. I wash my hands all the time and worry if they’re clean enough. I walk around feeling anxious every day. I almost never leave the house. Now, everyone is me!” and then he smiled a very satisfied smile.
We pondered this together as a family. Blake has struggled with contamination fears since he was very young. His anxiety can be debilitating. He self-isolates often (much to our chagrin, but apparently adaptive in the present circumstances), though he’s gradually improving on this. Now, it seems as though the whole world is living the way he is. For the first time in a long time, his world is the norm…and it feels good to him to belong. It’s not that he wishes this situation on anyone; it’s just good to feel like he knows how to live in the world the rest of us now find ourselves in.
Blake summed it up to us, as he shared his perspective, “Welcome to my world!” he said.
No, it’s not my birthday. It was, however, just my father’s birthday. He would have been 77. It was our family’s first birthday without him since his passing last March. It’s weird how someone who so frequently wasn’t there can leave such an empty space. Maybe that’s because, since he was frequently missing, it still seems like he’s back in the bedroom somewhere. And then something like a birthday comes along and you realize once more that you cannot actually go hunting through the back of the house for them.
Over the almost year since my dad has been gone, I’ve realized more and more how he probably had OCD and related disorders. And I missed them. How did I miss them?
The truth is, it’s not like I didn’t see the signs. I saw them perfectly well – literally right in front of me. An example: the other morning, as I was getting dressed, I grabbed a nail clipper to trim a broken toenail. An image came into my mind – my dad’s nails. His toenails and his fingernails. They were always picked and bitten. Not just a little. They were terribly, severely bitten and torn. Sometimes they were bloody. I think some were even gone.
Then another memory – his skin. My dad’s skin was scratched and picked raw, all over the place. A lot of times it was his legs. I remember my mom trying to remind him to stop. It was to no avail. He even saw doctors about it. I remember thinking my dad had a skin condition.
But…as I pondered my own toenail, I recognized that I was probably looking at Body Focused Repetitive Behaviors (BFRB’s) in my own dad. BFRB’s are what the mental health community classifies behaviors like hair pulling, skin picking, nail biting, and similar behaviors as. When a person does them a lot, they do damage. Bloody, scabby skin. Nails torn to painful levels. Hair missing. These behaviors, though not OCD, frequently go along with OCD.
How did I look at my dad’s skin and nails and never think “BFRB – get him some resources?” How was I blind to it? Was I so stuck in the role of child in my family that I never saw anything through my psychologist eyes? Would Dad have even acknowledged it was a problem that needed help? I don’t have answers, just my reflections.
If someone you care about is struggling with nail biting, skin picking, hair pulling, or similar behavior, The TLC Foundation for BFRB’s is a wonderful resource. In honor of my dad’s birthday, please help someone in need: https://www.bfrb.org/
A little while back I wrote a post about recognizing that my father, who passed away in March of this year, likely had Obsessive-Compulsive Disorder (OCD) (Read: OCD: It’s All In My Family). I’d been attending a conference when something I heard a speaker say sparked a recognition in me that my father probably had OCD, and I lamented not connecting the dots sooner, especially given that I am a psychologist who is an OCD and anxiety disorders specialist.
Since my dad passed, my siblings, my mom, and I have very slowly begun the process of sorting through some of his belongings. The other weekend, my brother and sister-in-law were in town so we spent some time looking through his things for keepsakes we would like. It was dusty, emotional, and sometimes humorous – and even just a bit surprising.
At one point, I perused the books on a shelf in the bedroom and noticed this tucked amongst the titles.
This is a book written by two pioneers in OCD work – Fugen Neziroglu, Ph.D., and Jose A. Yaryura-Tobias, M.D. The copy in my parents’ home had a copyright date of 1995. At first, I wondered if my mom might’ve picked it up to learn more about OCD after Blake was diagnosed. She’s always been interested and wanting to know more. But I wondered if that could be, given that this book was published more than a decade before Blake was diagnosed and four years before he was even born.
I shuffled down the hallway to find my mom in the family room. I showed her what I’d found. She seemed a little unsure, but she thought she’d picked it up for my father at some point because she must’ve thought reading it would be helpful for him. I asked if I might have the book and, having been given permission to take it, gently placed it on my bookshelf at my private practice office. There it sits, among my many other books about OCD and anxiety. I hope to read it soon, but for the meantime it represents a piece of my own history that I didn’t even know existed. I didn’t know I’d become an OCD specialist. I didn’t know OCD was in my family. Yet, there it was, just beneath my awareness, waiting to be discovered.
Raven* is exasperated. The feeling swells in her before the words come out. Tears of frustration born from years of suffering well up in her eyes as she struggles to wrap her mind around this .
“But why?” she asks. “Why didn’t anybody tell me about the right treatment for this? Why don’t you guys do a better job of getting the information out there?” She is pleading for me to help her make sense of something almost as unthinkable as the thoughts that torture her mind.
Raven has Obsessive-Compulsive Disorder (OCD). She’s the newest member of the free support group I run for adults with OCD. Hers is a story I’ve heard time and time again. She’s been terrorized for years by horrific and vivid thoughts and images. It’s meant time lost from work, time taken from her family (and from being a mother), hospitalizations, murmurings of psychosis. It took years to get a proper diagnosis, and years (and many treatment providers) after that to discover that there’s actually a treatment of choice – an actual best practice.
As the facilitator for this group, and the only representative of the professional mental health community, I struggle to explain to her, and the rest of the group members, about the disagreement in the mental health community. I try to explain the complexities where there really ought not to be any. But any words that come out of my mouth fall short. Thankfully, the group, and Raven, have shifted to a different focus.
My mind, however, has not moved. Raven’s question is simple and honest. She wants to know why, when she was diagnosed with OCD, she wasn’t immediately referred to a mental health provider who specialized in the most effective therapy for OCD – Exposure and Response Prevention (ERP), a type of Cognitive Behavior Therapy. That I am grasping for a reasonable answer taunts me. And the absurd realization that washes over me in this moment leaves me feeling embarrassed and ashamed, even unworthy of sitting in this room of brave OCD sufferers. We providers in the mental health community are not all trained to send people with OCD for ERP therapy.
An Open Letter
I rolled this issue around in my mind as I attended the 26th Annual OCD Conference in Austin, Texas. I spent an evening networking and brainstorming with other mental health professionals and advocates determined to further the cause of getting effective education and treatment to those who need it. Then something came my way that stoked the fire and increased the sense of urgency. It came in the form of a blog post that kept popping up in my social media feeds. I finally found time to click on it and read, unprepared for the emotional reaction that would ensue.
The post, titled “An Open Letter to Mental Health Providers,” by Jodi Langellotti is an impassioned plea to mental health providers from the wife of a longtime OCD sufferer. In it, she outlines the years her husband sought treatment for his OCD, going in and out of therapy and from therapist to therapist with nothing seeming to help. It wasn’t until six years into the process, when her husband, Chris, was “unable to care for himself” that a clinic program manager mentioned to the couple that there was actually treatment specifically for OCD and directed them to the website for the International OCD Foundation (IOCDF). On her own that evening, Jodi searched the IOCDF site and discovered the treatment that would begin the road to her husband’s recovery.
After sharing her family’s journey, Jodi implores mental health therapists to get educated, get properly trained, and to refer if they do not have proper ERP training. ” I am begging you to educate yourself,” she says. “Please, don’t tell people that you can help them with their OCD when you have had no specific training in treating this unbelievably complex and debilitating disorder. Please do not employ other forms of therapy which can actually make OCD worse, thereby increasing the suffering of your patient.“
Reading Jodi’s words tears me apart. It infuriates me about my mental health community, and it emboldens me at the same time. The IOCDF notes that “It takes an average of 14 – 17 years from the time OCD first appears for people to receive appropriate treatment.” (1) There is absolutely nothing that is acceptable about this. Specific treatment exists and the majority of those who receive appropriate treatment “will benefit from therapy, medicine, or a combination of the two.” (1) So why do mental health providers not refer those with OCD for ERP therapy? This is where it gets absurd.
We Aren’t Taught About the Best Treatment
Most mental health providers are not trained in graduate school on how to treat specific disorders, at least I wasn’t back in the late 1980’s and early 1990’s. I was trained on what the different disorders looked like, how they presented, and how to diagnose them. Instead of specific treatments, I was presented with theory and theoretical orientation. Choose the theory that best fits for you and approach mental illness accordingly. The problem with approaching mental health in this manner is that it is devoid of what I was taught as a practitioner-scientist. I wasn’t taught to go on “hunches” or what “fits” my way of thinking. Rather, I was taught to test hypotheses and follow the evidence – and the evidence overwhelmingly shows that ERP is the best treatment currently for OCD. Yet, the theoretical approach to practice persisted.
“Well,” you may be thinking, “she went to graduate school thirty years ago. Surely things have changed.” That’s not what I’m hearing. Shala Nicely, LPC, an OCD therapist, sufferer, and author, shares her experience in graduate school within the current decade in her personal memoir, “Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life.” Astonished at the lack of information on treatment in the “Diagnostic and Statistical Manual of Mental Disorders,” she asked her professor where she might find a listing of of the types of therapies to treat disorders.
“There isn’t one,” she was told, “There isn’t agreement in the field about the best way to treat any of these disorders.”
Recent years have seen the emergence of “evidenced-based practice” in the field of psychology. Basically, this means practicing according to what research demonstrates works best. But this has not seemed to stop the adherence to theoretical dogma. Those of us who do ERP for OCD or who stand up for its efficacy frequently face challenges from our theory-bound colleagues. When I took Blake to an ERP trained specialist more than a decade ago, I was questioned by one psychologist about whether this “stuff” my son’s therapist was “doing actually helps.” My own psychologist at the time, a trained psychoanalyst, informed me that my son wouldn’t get better until the “underlying issues” were uncovered. But he WAS getting better before my eyes.
In the towns and cities where we practice, ERP providers are frequently one of very few. We are sometimes regarded as doing “crazy” work or torturing our clients, or we are told that we are only putting a band-aid on a gaping wound and that there is sure to be “symptom substitution” when our work is put into practice (in reality, that is NOT the case). On Facebook forums for therapists, we bear witness to endless misinformation about what causes OCD or what will be helpful to OCD sufferers. When we stand up for what the evidence bears out, we are frequently mocked or dismissed with statements such as “In my opinion…” as if the research on what hurts and helps in OCD can be dismissed by opinion. (Thank goodness for the amazing group that popped up on Facebook in this past year to support those of us who practice this work – but I digress).
I do not write this to disregard the numerous mental health practitioners who recognize best practices for treating OCD, or the increasing numbers who are clambering to get trained to do the work (as evidenced by the IOCDF’s Behavior Therapy Training Institute regularly selling out in minutes). I am acknowledging that not providing training on best practices in graduate schools, and having theoretical battles while ignoring what data tell us is having dire consequences for consumers and for mental health providers, alike. As Shala Nicely so eloquently noted in her memoir:
“It was a chasm that unfortunately swallowed two innocent groups: mental health professionals, who could leave graduate school unaware of how to effectively treat people with OCD or other mental disorders, and clients with mental illnesses who, like me, could suffer needlessly for years, even decades, as a result.”
Time for an Uprising
As I ponder Raven’s question, I am aware of the divisions that exist in the mental health community. It is reminiscent of political parties sparring over ideological systems while action languishes. There is no room for it while people suffer, yet still it exists. Like Jodi Langellotti, I implore my colleagues and the educational institutions that train us to take the important steps: teach the best treatments and refer to providers who provide them. General practitioners refer to cardiologists and oncologists, specialists, when needed. Mental health ought to be no different.
But I fear that my field will not change unless it is demanded by the public. So to all who read this, recognize that you have power, too. We may need an uprising of sorts – a grass roots movement. Do not believe you must wait for mental health to change itself. Speak up to your general practitioners and your pediatricians. Speak to anyone you know who refers for mental health services. Tell them that OCD must be treated by a specialist in ERP. Take documents from the IOCDF, the Peace of Mind Foundation, the Anxiety and Depression Association of America (ADAA), or the practice guideline from the American Psychiatric Association (2) with you.
Those of us in the trenches doing the work of treating OCD using the treatment demonstrated to have the best impact will keep doing our part to spread the word. But we are buoyed by the informed voices that come from the public. We are energized when we see you posting during OCD Awareness Week, when you show up at OCD Walks, when you host screenings of movies like “Unstuck: An OCD Kids Movie,” or when you tell your story on the news, in a book, in an article, or in a simple social media post. It’s long past time for a change. I don’t want to keep listening endlessly to stories like Raven’s. I’m ready for stories of, “I was just diagnosed with OCD and my doctor knew to send me to a specialist.”
OCD In The Family 