I woke up this morning still trying to absorb my realization from this past week’s therapy session that Blake’s recovery will likely take longer than I originally had hoped. Blake continues to see treatment as something he is being “forced” to do, and he just has not recognized that our therapist is there to help him take the steps he will need to take to be ready for college in a year. So, in my mind, I’ve been working to readjust my expectations, and to hunker down for the potential long hall.
Meanwhile, just as I woke up, I received the news that our oldest, Michael, will be doing some hunkering down of his own. His university reported that it will close on Monday due to severe weather. Students are preparing to “shelter in place” should the need arrive. Michael, a Resident Advisor (RA), took his residents to shop for supplies today, as he experienced his first ever tropical storm warning due to Hurricane Irma. As their wireless internet is already beginning to fail, he and his fellow classmates are anticipating losing their power, as many already have in this hurricane.
In a phone call this evening, I told my boy how proud I am of him and how much I love him. The hubby gave fatherly advice that included staying away from the creek that runs just below their living quarters. Now all we can do is wait.
Wishing my best to all who are affected by this hurricane, whether it be because you are directly experiencing its effects, or because you love someone who is.
I don’t know what to say today, except that I felt the need to write. I feel a desire to cry, yet I’m not crying. Sometimes the only place to put my jumbled thoughts and emotions is into the written word.
The morning began with a text from our older son, Michael, who is in college across the country. His text bore a request for us to say prayers for his girlfriend’s parents. They are in the path of Hurricane Irma, in the mandatory evacuation area, yet they cannot leave. Her father’s work requires that he remain at the hospital. So, yes, they are in our prayers, as are so many others. I frankly can’t comprehend how you safely evacuate the Florida Keys or a good part of an entire county…
The next stop was for Blake’s annual checkup. His 18-year-old check up, complete with his signing paperwork, giving consent for my husband and I to obtain medical information, and the pediatrician singing down the hallway, “There’s another adult in the house!” Of course, that was followed by the pediatrician practically begging Blake to try allowing his psychiatrist to increase his medication.
“You’re probably on a sub-therapeutic dose.”
“It won’t help,” Blake replied – an answer I’ve heard over and over.
“You can’t say that unless you try it,” the pediatrician implored.
The pediatrician then excused me from the room, as he always does. When he emerged, he told me how much he enjoys Blake, what an interesting and intelligent kid he is.
“He really is,” I agreed. Then I asked, getting teary-eyed, “Can you please say a prayer for him?”
“We’re going to be saying a lot of prayers,” he answered. “I’ll put in a special one for Blake.”
Keeping us all in my own thoughts and prayers. – Angie
It’s a Thursday afternoon and I’m sitting cross-legged on our therapist’s office floor, carefully picking baked barbecue potato chip crumbs out of the tight weave of the carpet. I absentmindedly pop a larger piece into my mouth, savor the spiciness of it, and continue my task. My hubby is sitting on the ground close by, leaning against the wall and sipping iced tea. He chuckles quietly when the potato chip passes my lips.
This somewhat absurd scene began when the hubby showed up a few minutes late to our therapy session. He’d stopped for a bite to eat across the street. He still had his drink and his unopened potato chips in his hands.
“Do you mind if I eat my potato chips in your office?” he asked our therapist.
“Potato chips leave a lot of crumbs,” I say, automatically. Then I add, looking at our therapist, whose exposure antics are well known to me, “But maybe you wouldn’t mind that.”
“Oh, that’s right,” he says. “Potato chips can be very useful. May I borrow your bag?” he asks the hubby. “Sometimes I do this with them,” he says, and he empties the entire bag onto the office floor.
I burst out laughing and I glance at the hubby, wondering how he’s going to handle this. This is the man who admonishes me for some of the things I touch with my own patients who have contamination fears. He reaches for a large chip on the floor and pops it into his mouth. Blake says nothing, though I’m sure he places his face in his palms at one point.
Our therapist asks if we’ve ever sat on the floor at a party or gathering. Of course we have. Then he asks if we’ve ever gotten off the floor and gotten a snack and eaten it without washing out hands first. We both have. Blake is still silent. Our therapist explains that people without OCD contamination fears sit on floor and touch it and then go on to eat a snack with those same hands that touched the floor. He reasons that it’s not much different than eating potato chips off the floor. Then he shifts his attention and moves in to talk with Blake.
As Blake and the therapist talk, the hubby and I each bend over occasionally to pick up a chip and eat it. Soon, it becomes cumbersome and, being somewhat irrelevant to the conversation happening in the room, one at a time, we each move to sit on the floor. We take turns eating chips, as the pile grows smaller and smaller. What first seemed silly becomes a normal process to us, until I am left with tiny crumbs that I pick out of the carpet to throw away. I imagine to myself that this might be what it is like to participate in an exposure for OCD – feeling somewhat silly or hesitant at first, then feeling fairly normal. I also wonder if Blake has taken note that mom and dad were willing to be uncomfortable, even for a little bit. If he is, he isn’t showing it. For the time being, he has bigger issues to attend to.
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!”
“You can never win or lose if you don’t run the race” – Psychedelic Furs
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.
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).
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.
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: