I began writing this piece nearly 6 months ago. It was too painful then to complete it. Today I was ready to face it again.
Content: Mention of suicidality and hospitalization
“Are you angry?” she asks me.
Something in me breaks free. I AM angry, but not for the reasons she thinks.
I’m sitting on a telehealth call with my therapist. I’ve been working with her for over a year – since shortly after my now 22-year-old son, Blake, made his first call to the National Suicide Prevention Lifeline. We’ve been talking about how I’m dealing with Blake’s chronic suicidality and the aftermath of his recent hospitalizations. In particular, we are discussing the regular, yet now decreasing, messages I receive from people who care about me asking if things have gotten any better.
I am angry because I feel utterly abandoned – but not by friends or family. They have been wonderful. I feel abandoned by the very field I have come to love and to have put the utmost faith in. I feel abandoned by mental health.
I am a psychologist with more than thirty years of experience under my belt. I’ve worked in community clinics, and with people with some of the greatest social and emotional needs. I veered from my original path and toward specializing in Obsessive-Compulsive Disorder when it struck my own home and I realized that too few people understood the disorder or how to treat it. I have dedicated myself to educating people, making treatment more accessible, and volunteering my time for mental health causes. I have utterly, completely imbibed the mental health “Kool-Aid” because I believe people can be helped, because I am passionate about providing that help and directing others toward it, and I believe all people have a right to excellent mental health care. Ask anyone. I live, work, play, breathe, and sweat mental health advocacy.
And then my son became suicidal. And mental health abandoned me.
“I am angry,” I tell her.
“I am angry because the community I have believed so completely in has failed my son. It’s failed our family. I feel like I have lost my community.”
When Blake was in the hospital, he was told he belonged in a residential placement to address his depression and his OCD. When he interviewed for those and shared that he did not want to live and did not believe that he could get better, but agreed he would give it a try, he was declined admission. Too suicidal for a residential placement. Yet, he wasn’t suicidal enough to be in a hospital psychiatric unit. Our insurance fought with the hospital over reimbursement for days. Ultimately, the hospital agreed that he was finally not suicidal enough to be there. Yet, he had no placement to go to.
Take that in:
Too suicidal for a residential placement
Not suicidal enough for a psychiatric unit
And so he was sent home…
Our son was released home from his second two week stay in the hospital with an appointment with a telehealth psychiatric practice (who, when they met with him, merely told him he was too severe for them to treat) and the phone number for a mental health companion service (not covered by insurance) that charges more per single visit than many people make in a week. It was then that I was hit with the gigantic void that exists in mental health. No one checked in on us or our son to make sure he was well. Not the hospital. Not his previous therapists. No one directed us toward treatment that might be useful for him. We were left to figure it out. He was very “severe” we were told – but we were left alone, scared, and confused.
Our family is incredibly privileged. My husband had foresight and we had the ability to save a little money from each paycheck for most of the time we’ve been working. It’s turned into a nice savings. We can take the financial hit right now. I am a psychologist who is active in my professional community and I have many connections. I can call people who know people.
And even with that, the system is confusing. There may be treatment for young adults like Blake, but the point is, I’m more knowledgeable than the average mental health consumer and this is unbelievably confusing for me. The bits of treatment we have cobbled together so far are mostly not covered by insurance. The costs are staggering. I am not complaining. My son is worth it. I am able to pay for it. Many, many people would not be able to do so. And it is just not right.
Humans deserve a better mental health system than the one I am feeling abandoned by. I feel let down and disillusioned by something I’ve poured myself into and I’m still licking my wounds and taking care of what’s at home. But I hope to turn this experience into something more. Mental health can be better. It can be the care system I believed it to be. I am an ardent believer that one person can make a difference – even if it is a very small one – and, as I regain my own personal sense of strength, I will dedicate myself to making a better system. We all deserve it.
WordPress informed me that in July I hit eight years blogging here at “OCD in the Family.” Unreal. It gave me pause to think back a bit (oh, and also to update my “About” page). I remember where I was when this blog was born. Blake had just turned 14. Michael was 16. And I was in a place where I felt powerless to help my treatment-refusing son, to be a good mother to both of my teens, and to have a healthy marriage and family life. Now my boy are both young adults, trying to find their way in this world.
Over these years, the blog has evolved. It has shown our ups and downs, it’s grown to cover the topics of depression, suicidality, hospitalization, treatment, and life as a therapist who specializes in Obsessive-Compulsive Disorder and anxiety disorders. I’ve learned much – and my learning continues.
One very special thing over the years has been the connections I’ve made with readers. Some are fellow bloggers who I’ve actually gotten to meet in real life, others are regular commenters who I’ve grown so fond of over the years, some comment from time-to-time or only once, and others leave a “like” or just their imprint in my daily stats. However you’ve been here, reader, I am so grateful that you chose to stop for a moment and visit with me.
I plan to continue to share our family journey, wherever it goes. I’m honored if you come along.
It’s been a little while since I’ve written and someone just reached out to me to ask how things have been since Blake’s hospitalization. I’m guessing this person is not the only one who has wanted to know so I’d like to share a little update. This style is uncharacteristic for me on this blog, but I’m so very tired lately, and it’s the easiest way for me to share with you what has been going on.
Not long after my last post Blake returned home and started in a partial hospitalization program (for OCD, anxiety, and depression). That means he went five days a week for six hours each day. Without sharing too many details, I can say that it did not go well for him and he was admitted back to the hospital within a couple weeks of being released. This second hospitalization was longer and he is now home again. We are working as a family to put together the pieces of what aftercare will look like.
I can share my own personal experience of this as being scary, confusing, and an emotional roller coaster. When your young adult is admitted to a psychiatric ward and held, they (and you) lose control over exactly what happens and when they get to leave. There are twists and turns on a daily basis – he’s going to be trying this procedure. No, wait, he’s not. He’s on this medication. No, we changed that two days ago. We’re recommending this program. No, we’re not. We think it’s this diagnosis. No, we changed our mind – it’s this. Oh, can you pick him up in two hours? He’s coming home.
My head has been spinning and it’s not been easy to regain my balance. I’m decreasing my workload as much as I can to attend to my family. As many of you know, I’m a psychologist who specializes in treating anxiety and Obsessive-Compulsive Disorder. I can tell you that none of my education, training, or experience has prepared me to face this situation more than anybody else. I don’t like that. Sometimes it feels like Blake has been moved from professional to professional and there’s no one staying involved long enough to keep things moving forward in a logical direction. It feels like we, as a family, have been tossed around – and now it is our job to sort out what’s next with the leads we have been given.
I’ll keep you posted on our progress. We are diving into uncharted waters. I hope that, someday, I can use this experience to help make is less scary and confusing for others.
It has been emotionally exhausting to be a mental health therapist this past year! Actually, it’s been emotionally exhausting being a human. As a psychologist, I have never before experienced a time where I have felt so many depending on me, while I try to navigate similar circumstances to the people I work with. And I have felt so drained after hours in front of the computer screen doing teletherapy that I have honestly found no energy to sit and write in this blog – until today.
Without going into details in this post, I will note that Blake and Michael are back in our home with the hubby and myself. What the future holds for them, and so many young adults I know and work with, is still to be written. For now, Michael is completing a graduate program from a distance, and Blake…. Well, Blake returned home wanting to go into therapy (not for OCD; for something else), and we are supporting him in doing that.
Now, here’s something to note: when you are a mental health professional, you cannot be therapist to your own family members. First, it’s actually considered a professional no-no. At the same time, your spouse and your children absolutely do not want you digging into their psyches. I mean, really, who among us wants our parents probing our emotional health? Makes sense, yes?
Oh, and also, the more you know about a subject, the more your family has absolutely no interest in hearing what you know. Yes. It’s true. I have specialized in anxiety and Obsessive-Compulsive Disorder for over a decade, write articles on these subjects, teach professionals at workshops, educate the public…BUT I KNOW NOTHING! If I even move to share information about anxiety or OCD among family, it is of no interest. So, I have learned (as my mental health professional colleagues have) to listen to my family, and even my friends, talk about their symptoms while I keep my mouth shut. I offer no recommendations or information unless I am specifically asked, lest it I be reminded, “Stop playing psychologist with me!” (and, yes, you do detect some frustration there – it’s like I know the coolest information, but no one wants to hear it. I digress.).
Anyhow, this state of “Mom-knows-nothing-about-anything-that could-be-helpful-to-me” made something that happened today all the more stunning.
“Mom…” Blake says. “How was it that I used to deal with intrusive thoughts when I was in ERP therapy for my OCD? I’ve been trying to purposely think the thoughts, but I’m only getting more uncomfortable.”
“Hmmm. Tell me a little bit more.”
“Well, I couldn’t sleep last night in part because of the thoughts, so I tried to think them, but it just felt worse. I didn’t feel better.”
“Would you be willing to tell me a little more, or would you like me to connect you with a colleague who can help you sort this out?” I ask.
“I’d like to see if you and I can figure out what I’m doing wrong,” he says.
“Of course,” I say. “I’m heading out to take something to Grandma. When I get back, you let me know when you’re ready. Set aside time with me.”
And I fully expected that would be that. When I returned home, though, Blake found me again. He actually wanted to learn what I know! And so we sat down. I was able to share the little understood secret of OCD: if you practice exposures with the goal of making your thoughts or discomfort go away, it will backfire on you. Your brain is too smart. OCD already tells you that you can’t handle being uncomfortable and that you’d better do something to make yourself feel better – and that is where it traps you.
“So, my job is to practice getting good at being uncomfortable,” Blake deducts.
“Yes,” I say, “but you have to have a really good reason that it’s worth doing that because why do it otherwise?”
And together we find his “why” and we create a mass of exposures he can use. He picks one he’s going to try over the next week. And then he says THIS:
“Thank you, Mom. It’s so nice having a therapist for a mother.”
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.
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.”
Sometimes treatment moves along at a snail’s pace – or even seems to go backward
When I began writing this blog five years ago, my son, Blake, was 14 years old and had recently refused treatment for his Obsessive-Compulsive Disorder (OCD). He’d had a relapse over the previous school year and, despite access to terrific treatment from specialists in Exposure and Response Prevention (ERP), he ultimately wanted to do it his way. I started writing as a way to express what was going on in my head, to document what was happening, and to sprinkle in stories of being an OCD specialist while living at home with OCD.
As time passed, my writing shifted. In many recent posts, I’ve focused on the depression that settled in over Blake, causing my hubby and I to make the decision to ask him to defer enrollment in college so that he might take care of himself and gain some skills. We entered therapy as a family. First, Blake refused to participate, and he launched into 18-year-old sized tantrums – turning over the belongings in his room, slamming doors and shutters – each time we introduced a new expectation that was meant to move him toward improved functioning. Finally, he came to treatment as a participant and even started meeting with the therapist without us. I’ve documented his struggles, our struggles, and his progress.
Now, Blake Turns 19…
In about a week, Blake will turn 19-years-old. I haven’t talked much about his OCD lately because we’ve mostly been dealing with depression. Blake’s sleep schedule became greatly dysregulated at the end of tenth grade. He sometimes slept until 10 at night; he was up until 3, 4, or 5 in the morning. Over this past year, he’s been awake all day most days. This has mostly been due to my waking him each morning if he doesn’t get up with his alarm. It’s something we agreed on with his therapist: no sleeping all day in this house; if you don’t get up on your own, we will wake you up. But that last hurdle, getting up on his own and staying awake, has been a challenge. Sometimes he does it. Sometimes he does not. In recent weeks, there’s been a slide backwards. He hasn’t gotten up on his own, and he falls back to sleep all over the house for great chunks of the day.
In our most recent therapy session, I joined Blake and the therapist and we focused on where things are at. Blake was dug deep into his position that “nothing” will work and, yet, he was unwilling to try anything new. Top that off with an essential element: Blake does not really want to accept that anyone else might know better than him and what his head is telling him. His brain tells him he’s a worthless screw-up and that it’ll never get better – and he listens to it. I will vouch that this young man is not worthless in any sense, but many steps forward that he has taken have been with pressure from others. I cannot recall a moment where he has honestly said, “I need help and I’m willing to allow others to walk me through this.”
Pivotal Moments
I watched as Blake’s therapist, a longtime specialist and pioneer in OCD treatment, dug in himself. I could see the struggle in him as he could see the road my son is headed down. He pointed out the direction Blake might be going in his quest to continue to do it Blake’s way.
“Blake, my sister’s mental health issue was destroying her life. We begged her to get treatment, to do it another way. But she continued to choose to do it her way…and it killed her.” I could sense the anguish in the therapist’s voice as he shared his personal story of losing a family member to refusing to get proper help. It’s kind of amazing when you reflect that the professional in front of you is a human being.
He continued, “It’s clear that coming to therapy once a week isn’t getting you to where you’d like to be. It might be time to think of doing something more. It might be time to think about residential treatment for OCD.”
“How would that help?” Blake asked. “They’d just be doing it for me.”
“It would help to have therapists and counselors and staff around 24 hours a day to help you learn to live differently.”
“It wouldn’t work. They’d just be forcing me.”
“You’re right. It wouldn’t work if you went into it with the same attitude you have. It wouldn’t work if you continued to see it as something others were pushing you to do. It might work if you were to recognize that doing it your way isn’t working and if you surrendered yourself to something new. You’d have to see yourself as worth it.”
“I’d feel like a freak,” Blake said quietly. “If I was so desperate as to go live in a hospital, I’d feel like a freak.”
“Blake,” I broke in, “if J were to check into a residential program for what he’s going through, would you think he was a desperate freak, or would you be proud of him for getting the treatment you know he needs?” I asked this in reference to someone close to us Blake worries about.
Without a pause Blake noted that he would be proud – and he made the connections.
“I guess I have some thinking to do,” Blake acknowledged.
An OCD Program?
You may have noticed above that Blake’s therapist did not suggest Blake consider going into a residential program for depression. He suggested a residential program for OCD. He suggested it at least twice (I didn’t include all the dialog). Why an OCD program? We never got to talk about it, but I think I know why. I believe the therapist thinks that much of what is going on with Blake can be traced to his OCD. Blake has an extremely low tolerance for uncertainty or discomfort of any kind. He actually shuts down and becomes unmovable when faced with an anxious moment. He prefers to live in a comfort zone according to rules he has determined are acceptable to live by (but that are actually dictated by OCD). He’s been living a life of religious rules for over six years that has been driven mostly by fear rather than joy and meaning.
Blake has something to think about. How much thinking he is doing, I do not know. I know he got himself out of bed for four days in a row – and he felt proud. And then he sunk into three days running of not getting up on his own and falling asleep for large chunks of time. He is mere weeks from leaving our home to finally beginning college in another state and living in an apartment with three roommates he will not know. If he elects to go to a residential treatment program, what would become of that? For now, I don’t know. I don’t know what happens if he goes to college, can’t get out of bed to go to school, and returns home. I don’t know what happens if he falls backward enough not to be able to leave home. Like all things that are in the future, I am waiting to see. I’m hoping for the best, but not deceiving myself in acknowledging that this just might not go well.
Recently, a patient came to session struggling more than usual. Depression had settled in on top of her Obsessive-Compulsive Disorder (OCD), which is not at all uncommon. It just happened on the heels of the deaths by suicide of Kate Spade and Anthony Bourdain, and it sparked her to act.
“I can understand how someone could do it,” she told me. “I can understand what it’s like to have it seem like it just doesn’t matter if you are here anymore.”
She went on to talk about what she felt like at the present time, and then it happened. Maybe I nodded with too much agreement. Maybe I empathized in such a way that sparked the recognition.
“You, too?” she asked.
“I once spent two weeks in bed. Only got out to do the essentials.”
It just seemed to spill out of me, my admission that I, too, have struggled at times with major depression. I didn’t share it for her sympathy or to make me feel better. It just seemed like the right moment to say, “Hey, you’re not alone, and this beast can be bested.”
“I’m sorry,” she said.
“It was before I knew much about how to deal with depression. I’ve learned a lot since then.” And then we had an in depth conversation about how to deal with her depression.
Sharing Personal Information
There’s a bit of a rule in the world of mental health professionals that we don’t share much about ourselves. The treatment session is for our patients, not the place for us to get our needs met. We have therapy and our own relationships outside of the therapy room for that. I actually came from a training experience that encouraged us to be “blank slates” to our patients. We were to answer questions about ourselves with, “How will the answer to that help your situation?” or “What makes you ask that question now?” It always felt strange to me to answer that way, but I did it figuring that I’d get used to it. I didn’t.
When I began treating individuals with OCD, it was already out there in the world that I was a parent of a child with OCD. I’d written articles about it and I shared about it with most of my patients if it seemed appropriate. Working with other parents, it seemed to give credence to what I was asking them to do. To many, it made it seem that I understood, on a deep level, what they were going through. For me, it felt more genuine.
I don’t know if it was the right thing to do, letting my patient know I’d experienced depression myself. I’m not going to try to justify it, and I’m going to have to continue to look at why, when, and how I share personal information with my patients. I do know that being more real feels like a better approach than being a mystery or a “blank slate.” I do things in session like share about the panic attack I had at forty feet below the surface of the ocean while scuba diving. I share about the intense fear I had of public speaking when I was younger – so great that it nearly prevented me from pursuing a career as a psychologist (we had to take an oral exam). And I share how I learned not to have these things rule my experience.
On the day my patient came in struggling with depression, I took the session outside. It’s not something a lot of therapists do, but it’s not so unusual. I took it outside because we uncovered the fact that my patient had stopped her daily walking routine a few months ago, and because we talked about the importance of exercise as one component in dealing with depression. And so we walked. She in her athletic shoes and me in my dress sandals. Together we sought out slight inclines in the neighborhood and we climbed them. I got blisters…and a note from her the next morning showing the miles she’d walked and describing how the fog was beginning to lift.
OCD can make simple tasks like cutting food unimaginable
I’ve been trying to write this post for several days now. I keep starting – and then I get stuck. I can’t seem to think of the right way to write or how to organize it – so let me just start:
Last week, in Fullerton, California, a mental health therapist was stabbed and held at knife point by a patient. The ordeal ended with the patient being shot and killed by the police. The therapist survived. A tragic scenario all around and my heart is with everyone affected.
As the mental health community takes a few steps back to reflect and recalibrate, I find my own thoughts drifting to my work with Obsessive-Compulsive Disorder (OCD). Our psychological associations use happenings such as these as an opportunity to remind us how important it is for mental health practitioners to have a “safety plan” in place in case a patient turns violent. In the 2008 article “How to: Stay safe in practice,” published by the American Psychological Association (APA), author Christopher Munsey notes that mental health practitioners ought to “remove potential weapons” from our offices. This includes “letter opener(s) or heavy paperweight(s).” And yet this goes counter to the work I do in my office with my patients.
A Knife in My Office
Less than a week before the stabbing in California, I sat on the floor of my office with a young adult patient. We were no more than a couple of feet from one another. Poised between us, on a cutting board was a paring knife, an essential tool for the exposure we were doing. You see, my patient had not held anything sharper than a butter knife for over one year. Formerly a joyful chef in his home, his OCD caused him to worry over intrusive thoughts in his head that made him fear he might stab a family member (or anyone close by) if he held a knife. His cooking all but ceased. The whole family missed his meal preparation. And so, on that day on my office floor, we faced his OCD head on by placing a knife of his choice (I’d brought in an assortment) on a cutting board that he dared to get close to.
My patient’s anxiety skyrocketed as he approached the knife. He shook and he sweated as he inched closer and his hand reached toward it. We ended the exposure, 45 minutes later, with him having managed to place two fingers on the handle (lest you wonder if this was progress, it is of note that he began on the other side of the room, about six feet away). Tears fell out of his mother’s eyes as she watched from the sidelines and began to fully comprehend the extent of her son’s fears, as well as the bravery he possesses.
But, are we foolish…
Bringing a knife into session is not so unusual for those of us who treat OCD. If our patient has harm obsessions, sometimes a knife is just what is needed to stand up to the disorder. It is a reclaiming of what OCD steals from the sufferer, the ability to do a simple task most of us do not think twice about – cut our food.
Yet, the non-OCD community regards us, at times, as outlandish, misguided, or downright wrong about our approach to treatment. An extremely well-respected and experienced psychologist I know once shared a story in an OCD workshop I attended about how an insurance company representative questioned his methods. The conversation began something like this:
“Well, Dr. X, if your patient is afraid she will harm someone with a knife, isn’t it ill advised to be using knives in your treatment?”
The psychologist then had to explain to the representative, also a psychologist, how OCD is treated. It was completely a foreign concept to the representative. A sad state when insurers of treatment do not understand how a disorder is treated. But they are not alone. I’m fairly certain much of the psychology community does not understand what goes on in a treatment setting when OCD is the focus, and I’m pretty sure they’d be aghast upon first learning about it.
So, while my professional organization suggests I remove all items that might be used as weapons against me from my office, my treatment with patients with “harm” OCD often involves noticing what items in my office might actually be used as weapons. Of course our focus is on helping them to tolerate their anxiety about being in the presence of their feared thoughts and the everyday items that might trigger these. My taking these steps in treatment means I must do a very thorough evaluation of my patient and have come to a well-thought out treatment plan that is in keeping with their diagnosis.
What about the patients…
I also know that incidents such as the one in California will trigger many OCD sufferers. A population that already regularly questions its own sanity may point to this incident as evidence that they may go “crazy” and attack someone. It could make them fearful of doing exposure work in session (“I might crack while doing an exposure and hurt my therapist.”). Worse, it could make them delay attending therapy for fear they will do something similar.
Where am I going with this? Mostly, I am saddened that incidents like this ever occur. They are apparently rare, but they do happen. As an OCD therapist, like all mental health practitioners, I must stay aware of this and not take safety in the office in a cavalier way. At the same time, I must do a thorough evaluation of my patients and act in the best interest of helping them to get healthy and functioning again.
Providing further evidence that Obsessive-Compulsive Disorder (OCD) is not always what we tend to think it is, I submit the following experience from Blake’s recent therapy session:
I don’t frequently participate in Blake’s therapy anymore. In fact, if I do come in for something, he’s taken to asking me to leave at some point now. It’s a far cry from when he began therapy a year ago, or should I say refused therapy one year ago. But that’s another story one can dig into the archives to read. Let’s suffice it to say that Blake choosing to go into a therapy session and talk with his therapist alone is major progress. Recently, though, I asked to come in for clarification on how the therapist had requested that the hubby and I handle something.
The basic issue was this: Blake had returned to his habit of getting back in to bed or falling asleep on the sofa in the morning. I was growing tired of repeatedly waking him and wondered if our plan needed to be modified. Blake’s therapist was looking to understand what gets in Blake’s way of staying awake. That’s when he shared this interesting anecdote.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
“I work with a woman who cannot begin work in the morning if she has a certain body ache. So, she’s taken to checking herself every morning to see if she has that body ache, and most of the time, she finds it. So, she can’t start working and she keeps monitoring herself until it is gone. Actually, it’s OCD.”
Do you get it? Do you see the OCD? If you don’t that’s okay; I’ll explain it shortly. First, here’s Blake’s response:
“Oh my gosh. I get that,” Blake says. “I wake up feeling miserable in the morning. I’m so tired and I feel sick. I know if I start on anything that it’ll be terrible and I won’t like my work. So, I won’t work if I feel that way.”
“Then what we need to teach you is to work even though you might have that feeling. We have to teach you to work through that feeling,” replied his therapist.
Wait, did my son just admit to some OCD in his life? I don’t know if he realized it, but his therapist just implied that his issue with getting up in the morning had to do with OCD – and he agreed…
Where’s the OCD?
If all that escaped you, or if you just can barely make out the OCD, let me help. Think of obsessions as something that brings anxiety or discomfort up. Think of compulsions as bringing anxiety or discomfort down. It’s that simple. Now, let’s look at the patient the therapist mentioned.
The woman who works from home believes she cannot work if she has a certain ache. The concern she will have that ache is the obsession. That brings her anxiety up. The checking her body for the ache is the compulsion, as are the monitoring and refusing to work. They bring her discomfort down.
Blake holds the belief that he will turn out what he calls “trash work” if he feels tired or sick. That’s the obsession; it brings his discomfort up. His compulsion? Returning to bed or lying down anywhere and just checking out. He’ll only work if he feels “just right.” And that brings his discomfort down.
Is it a stretch? Could an OCD pattern be part of what is holding Blake back right now? Maybe. Maybe not. It’s interesting how he jumped on the therapist’s comparison. So, I wonder in my mind. Is it OCD? Is it depression? The therapist’s notion that Blake needs to work right through his discomfort fits for both – at least that’s what I think. Now, let’s see if Blake starts to do it…
OCD In The Family 