I Don’t Want To, But I Have To

“I really don’t want to be here, but I have to…”

It’s another Thursday afternoon and, as usual, Blake, the hubby, and I are sitting in our therapist’s office. In what’s become a more and more commonplace occurrence, the hubby and I are sitting quietly on the sofa. Blake is in a chair hunched over his knees. The therapist is sitting close to Blake and is locked in conversation with him.

I’m not sure why the hubby and I are in the room sometimes, lately, but Blake wants us in there. The hubby allows his eyes to close; I think that’s how he focuses on the intimate conversation taking place to our left.

The topic, as it has been lately, is depression. Blake is describing the all-too-familiar pattern of following his depressed, dark thoughts down an endless rabbit hole of despair. Our therapist is gently directing Blake toward possibly confronting this pattern. Blake shares his perception of life holding no positive meaning. Suddenly, he seems a little breathless.

“This is really uncomfortable to talk about,” he notes. “I really don’t want to talk about it, but I have to.”

I watch him gather himself and continue. He pauses again, later – and, again, he comments. “I don’t want to, but I have to.”

I take this as a sign of bravery, a sign that Blake recognizes that, in order to gain the upper hand on his depression and his OCD, he has some very uncomfortable work to do. Later, I ask him about it, and he confirms this interpretation to me. Blake understands that he must share how he thinks, even though it is incredibly uncomfortable, so that he can move forward and begin the process of healing.

Honestly, this is remarkable to witness. We, as a family, have been though years of struggle. We’ve watched Blake succumb to OCD thinking, and then to depression. He has battled facing anything that is even the slightest bit uncomfortable. Yet, now, at age 18, there are glimmers of willingness to do the hard work – to fight for a life worth living. I recognize that there will be more struggles and steps backward, and that this will be a process. Yet, this is new and it is something I don’t think I’ve ever seen in my son before. I am so very proud of him.

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Showdown and Shooting

Brand new baby box turtles

I found last week a difficult week to post. Blake and I had some serious run-ins, and our community was greatly affected by the massacre in Las Vegas. My attention was on home and community and I’m just now feeling like I can give a bit of attention to my blog.

On the Homefront

Blake continues to attend therapy, yet he is really not completely on board. I heard last week that the hubby and I “smother” him – his term. It’s probably true.

“You and so many others keep trying to help me. It’s like life rings are getting thrown at me from so many directions. I’m overwhelmed. And I almost feel like drowning just to get you to leave me alone!” he told me one evening.

I told him I appreciated knowing that he feels smothered by us.

“I feel like I’ve never done anything on my own. I wish you guys would throw me out so I’d be on the street and prove that I can make it.”

“I get it that you want to prove that you can make it, Blake. It just makes me wonder, does the only way you’ll be able to take charge of your own life and make of it what you want have to involve living on the street? Or can it happen with a roof over your head and food to eat?”

When our therapist heard Blake’s reasoning for continuing to resist getting better, he commented, “I guess you’ve got a lot of evidence to prove that continuing to drown does not get people to back off.”

Then he kicked the hubby and I out of the therapy office and met with Blake alone – which was actually quite nice, oddly enough.

In the Community

While Blake was begging for us to leave him alone, the community came calling. Thirty-six hours after the Las Vegas shooting, a colleague reached out. At least ten members of our community had been shot. Many more had been at the Route 91 festival.

“Can you let me know of any Las Vegas debriefing sessions in {our community}? I have one client who was there…another coming in. You are so connected. I know you may hear of something.”

Up until that point, I’d felt helpless. As a psychologist, I know the effects of an event such as this, but I didn’t know how I could help. Suddenly, I knew. I contacted our local community mental health center, a place I used to work and serve on the board of directors. I asked whether they would be offering any community support events. Two days later, I found myself on a panel discussing ways to cope, how to help our children, what we might expect in the days and weeks ahead.

The next thing I knew, I was publicizing support events to our local mental health community, listening to survivors’ stories, showing up on the local news, and connecting those with the resources to those who needed it. Someone added me to a Facebook group for survivors and helpers. There are nearly 350 people in that group. How did so many of our community members happen to be at this event? It felt like a mission. I became consumed with helping.

…And then I kind of crashed. I don’t know if it was compassion fatigue, but I needed to disengage for a bit from the tension in the house and the craziness in the world.

New Life

Just when I felt at my lowest, nature sent me a gift. I stepped into our backyard just before a meeting and was greeted by two, silver-dollar sized baby box turtles. For a moment, my heart raced with joy. Three months ago, I watched in amazement as my thirty-something-year-old turtle laid a clutch of eggs and buried them in her enclosure. Now, two hatchlings sat in the yard, covered in dirt – a beautiful reminder of how life renews itself. A chance for me to step back and breathe.

When OCD Seizes Religion

There is a lot written about Obsessive-Compulsive Disorder and religion. Heck, some of the earliest recognized forms of OCD were in religious circles: people who were constantly in confession, people who said prayers over and over until they got them just right.  At conferences and workshops I’ve attended on OCD and religion, the guiding principal has been that one must respect a person’s religious values and practices, while helping them to separate out that part which is OCD. What, however, is to be done when being religious is all about OCD in the first place? Let me explain.

Blake became religious about six years ago. Our family certainly identifies with our religion. We celebrate holidays, we do attend some services, and the hubby and I enjoy learning and studying about our religion. However, there are very few who really know us who would describe us as a devoutly religious family. That’s why it was a surprise to many when our son became very religious.

The hubby and I believed Blake’s fast journey to religious observance was OCD driven, with fear being the motivating factor. Blake contended that was not true; he professed that he was doing this out of desire and wanting to learn  more.  Still, he repeated prayers, he stressed about the way he observed, and he was overly punitive to himself when he made a mistake in observance. We consulted with mental health professionals and religious authorities to help separate out what was OCD and what was true observance. I embarked on learning more about my own religion in order to keep up with what my son was doing. We were welcomed by those who were more religiously observant and who graciously accepted Blake into their midst. It was a fascinating journey.

Still, although Blake found some happiness in being religious, I often observed that it seemed like torture. Instead of his finding meaning in his observance, he spent many nights awake, crying in despair because he couldn’t believe enough – couldn’t answer whether the Almighty was actually there, or whether he had completely changed his life in vain. The hubby and I were concerned that Blake’s flight into religion might eventually lead him on a path in the opposite direction.

And then, the confession…

It wasn’t a confession in the sense that people with OCD often confess. I mean, Blake didn’t come to us to clear his conscience or to get reassurance. One tortured night a couple of months ago, as he sat with tears in his eyes, he told us the truth that was in his heart.

“I don’t actually believe,” he told us, and then bravely proceeded to tell his religious mentors, who accepted his comments with various degrees of receptivity. The best response came from the mentor who told him that religion was not supposed to cause him despair and pain, and who reiterated that he will support him no matter what he does.

This week, Blake shared his most insightful revelation yet.

“It’s always been about OCD,” he told us. “It’s what so much of my depression is about. I’ve only practiced because OCD made me afraid not to. I’ve realized over the last several days that I’d rather not go on living this way.”

Of course, I immediately became fearful that this meant Blake was suicidal. So, I asked, and he assured me he was not.

“I just think something is wrong when religion makes you want to contemplate suicide,” he told me. “I like to think there is a G-d and that’s not what religion is supposed to do. I’m just not sure what I’m going to do yet. I just know I can’t keep doing what I have been.”

So what does one do when their entire religious practice, or most of it, has been based on OCD saying, ‘You have to, or something bad might happen?’ How does one proceed? Does one give it all up? Does one change things in increments? Blake is terrified to make any changes at all, and it’s because of that old familiar OCD anxiety. He’s terrified to feel the discomfort that comes from defying one’s OCD – and he’s stuck in this in between place.

“I feel like I went searching for G-d. I knocked on the door to his house, but he wasn’t home. Now, I feel like giving up. He knows where I am and he can come find me,” Blake told us, thinking out loud.

“Maybe you went looking in the wrong places or under the wrong pretense,” I suggested. “I can imagine that G-d wouldn’t have wanted you coming out of fear only. Perhaps it’s time for you to approach things in a new way. Maybe it’s time for you to stand up to your OCD and your fear. Maybe your job is to do the things that make you feel scared and anxious.”

“But it’s too scary,” Blake said. “I’m so nervous.”

“You’ve stood up to OCD fears before, Blake. I know you will again when you are ready.”

So my son sits, for now, in his in between space. He recognizes his OCD, knows he must do something different, but is still too afraid to act. The hubby and I support wherever he must be in this process. I can only imagine the difficulty of being where he is, emotionally. And I can only hope that he finds the courage to move forward soon.

Grown, But Not Flown

Image courtesy of imagerymajestic at FreeDigitalPhotos.net

My Facebook feed is full of them – images of smiling young adults ready to begin their new adventures and dorm rooms decorated with more style than I’ve ever been capable of mustering, first day photos of fresh faces off to their first day of community college, declarations of pride from parents for all that their child has accomplished and has yet to accomplish ahead of them, and the teary-eyed laments of friends who are saying farewell (for a little while) to their progeny. There’s also the sharing of articles about navigating these new milestones in a family’s life, the most frequent of which I see coming from a website called Grown and Flown. Since it kept showing up in my feed, I perused said website and it is chock full of useful articles (e.g, dorm room shopping, college care package ideas, dealing with the empty nest, community college, helping special needs students adjust to college, etc.), but doing so left me feeling all the more alone.

What’s missing from all of these posts and article shares is the situation my husband and I are facing right now, the one where the young adult is not going to college/university, community college, taking a gap year to volunteer or study or travel, or obtaining/seeking employment. As I peruse my feed I wonder where the posts are that read,”I love Jake so much and he’s staying home in bed this year because he’s too depressed to get out! No job or classes for this young man. It’s gonna be a mental health year!” It could even have a photo of Jake asleep in his bed at 4 o’clock in the afternoon. Where are the website articles entitled, “When Mental Illness Prevents Your College Age Child From Doing Anything That Resembles Productivity?” I may not have dug deep enough into the websites my friends are posting from, but I could not find articles there for parents living with young adults who might otherwise be launching into some new phase, but, instead, are struggling with debilitating mental illness.

Don’t get me wrong. I do not begrudge my friends their joy, or even their bittersweet reflections, as their children begin their new journeys. I feel for the many emotions they are experiencing. Two years ago, we took our oldest son across the country, moved him into a tiny two person room, and dealt with pangs of loneliness mixed with overflowing pride. At the same time, I feel deep sadness at our own situation with our youngest son, and I’m not really sure how to talk about it with others as I watch the images and articles of what might have been scroll by.

When Things Don’t Go According to Plan

I never imagined that I would have a child who would finish high school and not be ready to attend college or begin a job. I do not think parents imagine that their child will develop a severe mental illness and not be able to do what his or her peers are doing. My guess is that most have big hopes and plan in that direction – my husband and I certainly did. With one child, that’s the way it went. With our second, it has been different.

Our younger son, Blake, has had his share of struggles. He was diagnosed with Obsessive-Compulsive Disorder (OCD) at age seven. He went through effective treatment, and has had periods where he has done very well. As a teenager, he had a relapse, and it was difficult to engage him in treatment, despite much begging and pleading on my husband’s and my part. When depression began to settle in on top of his OCD, his basic functioning suffered tremendously. He withdrew more and more from the world and lost joy for most activities. His sleep wake schedule became reversed, and the future felt dismal.

My husband and I propped Blake up. We supported him in school; we practically pushed him through his senior year. And we kept hoping for the best. It was exciting when Blake was accepted to the school of his choice, one that would lead him on a career path he had been talking about since he was seven. Yet, as senior year drew closer to the end, we had to face a painful truth. Blake was not getting better; he was getting worse. Sending him to another state to live in an apartment and enrolling him in a grueling program would spell disaster.

With guidance from our family therapist, we told Blake that we would not be sending him to school this academic year. We asked him to defer his enrollment for one year (something his school is very supportive of) so that he could focus on getting emotionally healthy. Blake was not a fan of our decision, to say the least, and, initially, he shut down even more. However, my husband and I feel secure that we made the decision that was best for our son and our family. Ultimately, our hope is that, with time and treatment, our son will be much better equipped to head out into the world.

It’s an awkward road, though. Frequently, people come up to us asking what Blake is up to this year. When I say that he is taking the year off, that answer is inevitably followed by the question, “Oh, so what is he doing with his time off?” Initially, I felt the need to fully explain the situation to people, but that was awkward for us both. Now I simply say that he is taking the year to fully prepare himself for what’s next. It works.

It’s also an incredibly isolating experience. Back to the Facebook feed. While I am watching and celebrating other young adults I know headed on to something new, I feel alone in having a son struggling so greatly. Oh, there are parents who connect to each other. We do so at conferences, in online support groups (and some in person), and through specialized groups on social media. We see our lives mirrored in articles we find on mental health websites and blogs. Rarely do we see what we are going through running through our social media feeds, or in articles that are widely shared in the mainstream.  Sometimes I feel marginalized or irrelevant and wish that mental health issues, such as the ones we are facing, were just out there in full view and with widespread discussion.

What If Someone Wrote That Article?

If I were to write an article that were to reach out not just to parents of young adults struggling with mental illness, but to all parents of young adults, I would make it infinitely clear that there is no stigma in facing mental health challenges any more than there is in facing physical health challenges. I would note that, just as some young people become physically ill and must delay plans to take time to recover, so do some become mentally ill. I would point out that, by taking the time to get treatment now, a young person increases their likelihood of success in their chosen path. And I would be emphatic that we ought to celebrate the young adult who is working on their mental health, just as we celebrate the one who is moving into that dormitory this week.

Maybe, with that kind of widespread awareness, I would start to see something new in my social media feed. It might read something like this:

“It is with great pride and joy that I share that my young adult is taking this year to really take care of themself. It’s been a tough road, and the struggle has been real, but this is one brave kiddo who has the courage to get help and to heal. I love you, my child!”

Now, that’s one post I could definitely “Love.”

“Which Will You Choose?”

“You can never win or lose if you don’t run the race” – Psychedelic Furs

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Blake is curled up in a ball in the therapist’s office. His knees are pulled up against his chest and his face is buried in his legs. I’m like a fly on the wall as I lean closer to the hubby and witness the scene between my son and his psychologist. It’s almost like we aren’t there, and I try to remain as unobtrusive as possible.

“This is really uncomfortable for you,” the therapist says.

“I’m always uncomfortable,” Blake answers, his voice muffled and pained from between his legs.

The therapist is working to get Blake to agree to adding some structure to his day, to begin to move back into life. Blake frequently spends his days sleeping, or playing video games. He feels like “a failure,” but he doesn’t act to reverse that. He sinks deeper and deeper into depression.

The therapist moves in close. He is mere inches from Blake. “It gets difficult for you when it’s time to take action.”

“I don’t feel like doing anything will help. I don’t feel like doing anything.”

The therapist pushes on, softly, but not backing down. “You have depression, Blake. And you have OCD, and those two frequently come together. Part of your depression is biological – and the natural course of that is for it to get worse. It will tell you to keep doing nothing and you will feel worse.”

“But I don’t feel better when I do something,” Blake replies.

“Here’s the thing,” the therapist says. “Feelings lie. And  there’s a lot of hard work ahead of you. The truth is, the first time you do something, you won’t feel better. Feelings are the last thing to change. You have to change your behavior first.”

On the couch, out of Blake’s view, quiet tears roll down my cheeks. I am touched by the tender interaction between my son and our therapist. The therapist has just shared with Blake the deeply personal story of two family members – one who chose life and one who said they would choose, but ultimately left the world prematurely, a result of never having done so.

The therapist rolls his chair side-by-side with Blake’s. He gestures with a flourish at two pieces of artwork on the wall, one by each of the aforementioned family members. Both pieces of artwork are striking in their own right, yet we know the direction each artist’s life went.

“Which will you choose?” he asks Blake, as they both gaze in the direction of the artwork. “Not choosing is a choice not to act.”

“I should choose this one,” Blake answers.

“There’s this thing about ‘shoulds’,” says the therapist. “They make it sound like someone is shouting at you. ‘You should do this!’ Things sound better when we remove the ‘should.’ ”

“I’ll choose this one,” says Blake.

It remains to be seen whether Blake will choose the tough road of living life. It will mean taking on new tasks each week, following through, refining his approach, and feeling a whole lot of discomfort before his feelings of depression may begin to fade just a bit. For this week, he’s agreed to take on a task. He must schedule in an agreed upon amount of time each day for a task he and the therapist have identified as important to him.

I’m doing my best to back off and allow him to follow through. I want to see him leave our home in a year to pursue his career of interest. I’m terribly afraid he won’t. My mom instincts make me want to check up on him, to nudge, to hold him accountable. But, honestly, those are my feelings, and feelings can lie to us. I must also take the difficult road – the uncomfortable one – and let him try this out on his own and be accountable for what he does or does not do. I must continue to find my new way.

 

OCD and the Importance of Specialists

Image courtesy of lekkyjustdoit at FreeDigitalPhotos.net

The voice on the other end of the line is searching for an answer. She knows there is another way. There has to be. I’m speaking to a woman. I don’t know her age. I only know that she’s self-diagnosed with OCD and she is looking for help. Her plea to me draws me in; this is what I’m passionate about: helping people with OCD find help and get better. At the same time, the call leaves me furious. Something inside of me demands, “Something must be done about this!

A little background. I am the parent of a young adult with OCD. I am also a clinical psychologist. Several years after my son’s OCD diagnosis and successful treatment, I sought out training and began to specialize in the treatment of OCD. I did not want other families to go through what we did. Heck, I was a psychologist and I had had no clue about OCD. I’d been lucky to find help through my psychology connections. How were people without a psychology background to know the “what’s,” “why’s,” and “how’s” of OCD?

The Woman on the Line

The woman I’m speaking to is resourceful. She’s figured out that there’s a name for the disturbing thoughts that go through her mind, and for the anxiety and discomfort created by them. It’s called Obsessive-Compulsive Disorder. She is troubled by fears that she will harm herself in some way. She does not wish to harm herself. The thoughts terrify her. She wants to learn to deal with them in a better way, rather than spending great amounts of time ruminating. What she describes to me sounds a great deal like a theme that the OCD community has dubbed “Harm OCD.” It’s a fairly common OCD theme.

“I wanted to use my health insurance,” she tells me. “I went to see a therapist who wasn’t an OCD specialist, but he seemed professional enough.”

What followed was anything but a pleasant experience. When she told the therapist that she believed she had OCD and that her obsessions centered around thoughts of harming herself, the therapist told her that there was no such thing as the disorder she was talking about. His reasoning? He had never heard of it.

He told me I was suicidal and that the thoughts were just fragmented pieces of myself that I’d disowned,” she lamented.

“Let me guess,” I said. “The thoughts and the anxiety only got worse then.”

“Yes!” she responded with fervor.

“This is a frequent problem we see in the OCD community when people see therapists who are not specialists in treating OCD.”

Our talk continued with me providing resources, referrals, and information on finding a specialist to work with her. I trust that she will get into proper treatment and get the help she needs.

The Uninformed Psychology Community

Being immersed in the OCD community, I sometimes forget that the psychology and psychiatry community as a whole can be misinformed about OCD. Although I have never met this woman to be able to diagnose her, nor was I present to witness what happened in the consultation room, what she describes matches what many with OCD describe on their road to finding diagnosis and treatment. Not all mental health professionals are trained to diagnose or treat OCD. When a person has OCD, it is a specialist they must see.

People trust therapists and psychiatrists to be able to identify what is wrong and to be able to treat them. If their diagnosis is OCD, and if it manifests in a way that does not reflect what tends to be shown in the media, the diagnosis can be missed. What’s more, the treatment provided can end up making things even worse, as this woman shared. When she noted that she thought she had harm OCD and was told that that did not exist, it made her doubt and despair even greater.

What frustrates me is when mental health professionals do not admit that OCD is not their specialty, or when they are not willing to listen to the person in the room with them. A quick search on Google for “harm OCD” led me to over 700,000 results in less than a second. A search for “OCD suicidal obsessions” leads to nearly 300,000 results (my friend, Janet, at OCDtalk wrote an article on the subject last year).

Getting Help

The woman I spoke with was informed. She had done her research and she knew what she likely had. It was her reluctance to go outside of her insurance (or, perhaps better, to stand up to her insurance provider and ask that they approve her seeing an OCD specialist since there are none on her panel nearby) that led her to not getting the appropriate treatment. It’s not that the therapist she saw is not a talented professional; they just were not likely informed about OCD.

If you believe that you, or a loved one, have OCD, seek out a specialist. The International OCD Foundation has published a great article called, “How to Find the Right Therapist.” Both the International OCD Foundation and the Anxiety and Depression Association of America have features to help consumers find therapists. Starting with a specialist can help an OCD sufferer avoid wasted time spent in treatment that does not help. If there are no specialists in your area who take your insurance, you still have options. Perhaps there is a therapist on your insurance who is out of your immediate area, but provides therapy via secure video (they must be licensed in your state and your insurance company may or may not authorize this kind of treatment). Perhaps your insurance company can make an exception and authorize treatment outside of network. Additionally, if finances are an issue, do not be afraid to ask providers if they can provide you therapy at a reduced fee you can afford. There are many who will.

Above all, this is your health and your life. Getting the appropriate treatment is important. Do not stay in a treatment situation that feels inappropriate, or with a mental health professional who does not understand OCD, or who will not look at valid articles you point them to on the subject. OCD is treatable – and getting the right treatment is key to recovery.

 

 

 

OCD is Treatable

Image courtesy of Master isolated images at FreeDigitalPhotos.net

This week, as I was thinking about this blog, it occurred to me that something has been missing from my posts for some time. That “thing” is the notion that Obsessive-Compulsive Disorder is treatable; that there is hope for sufferers, their families, and those who care for them. That OCD is treatable was core to my very intentions behind creating this blog – and I fear that, lost in our situation lately, I’ve forgotten to mention this all-important point recently.

Anyone who is new to this blog may not know the history of OCD in our family. They may not have read my initial post in which I explained that our teenage son, Blake, through participation in treatment, had once lived a life where OCD had become a thing of the past. They may not know that I started this blog as a place to give my emotions and thoughts about our experience an outlet, lest I let them flow in front of Blake, who was refusing treatment at the time. They may not know that this blog began with the eternal hope that Blake, given some space, would decide to return to treatment and beat OCD back into oblivion once again.

I want readers to know that the situation we currently face, one in which our now eighteen-year-old frequently barely functions, is not a typical situation for a young man with OCD. I’m not saying that this does not happen when people do not get treatment. It obviously can happen. Blake, however, besides dealing with OCD, got hit by a tremendous bout of Major Depression – and it took us a while to find a professional who thought he could help even though Blake believed he was beyond being helped. Now we are all in treatment again, and we are peeling back the layers little-by-little with the hope that things will get better again. That is what I’ve been documenting lately.

At the same time, it is important for sufferers, or anyone reading this blog, to know that OCD is treatable. I know this as a mother who has been through cognitive behavior therapy/exposure with response prevention (CBT-ERP) with her son and seen amazing results. I know this as a therapist who has the true honor of watching her patients, young and old, show OCD the door and reclaim their lives. I know this as a reader of many blogs and an attendee at many conferences. People can and do get better from OCD. There is every reason to have hope.

If you continue to follow this blog, you will likely observe our family stumble and struggle. That’s just where we are right now. Yet, I continue to have hope that our son will get better once he can see that there is a light at the end of the tunnel. Thus, our journey continues. Thank you for bearing witness.

To view helpful information about effective OCD treatment, or to see stories about positive outcomes, I’ve listed a few helpful links below: