I’m passionate about Obsessive-Compulsive Disorder as a cause. I feel strongly about getting the word out and supporting this community – those who suffer with OCD and those of us who love someone who has it. I care about it so much that sometimes I take those clueless OCD humorous remarks personally.
Recently, I began a free support group in my community for adults with OCD. Running it is one of the highlights of my week. Watching the close community that is rapidly developing in that room warms my heart. So, of course, I want to promote the group so that others can participate and benefit, and I made a flyer. Then I excitedly sent the flyer to every therapist and psychiatrist I could think of.
BUT I MADE A MISTAKE
I put the wrong phone number on the flyer. Somewhat embarrassed, I asked everyone to delete the flyer and I sent out a new one. And I apologized for my error and for the multiple emails. Then I received this:
“No prob. At least we know you are not OCD! If you were, you would have read it 5 times before sending!”
This comment came from a therapist with many years of experience. I immediately felt the heat rise in me. I wanted to write back and school the therapist about the ignorance of that comment. I thought of snappy comebacks. I wanted to write, “Or maybe I am OCD, but my compulsions are something different from checking…” And then there’s just the phrase “you are not OCD.” Seriously, a person is NOT OCD. They might have OCD. I want to tell the therapist that, too.
But I Haven’t Said Anything
I haven’t said anything (except to you) because, well, I’m just a little too pissed right now. And I actually would like this therapist to send adults with OCD to the group. I don’t want to alienate people from the cause; I want to educate. So thank you for letting me rant just a bit. For now, I’m going to sit on my response…at least until my blood stops boiling.
“I understand what you’re saying – and I’m not interested.”
Blake is sitting in a chair in the therapist’s office and he’s frustrated and defensive. The therapist has brought up an issue that Blake has long refused to talk about – his Obsessive-Compulsive Disorder. Right now he is insisting that there is no problem. He’s happy with things as they are.
“I like the way I am. I’ve been this way my whole life and it doesn’t get in my way,” Blake says.
And, at the present time, this is true – for the most part. In the past, Blake’s OCD
has GREATLY gotten in his way. As a young child, his fear of contamination prevented him from getting work done because the pencils might have been touched by other children. Handball with the other kids was out of the question. A dip in a lake where people might have urinated? Never. His moral scrupulosity in middle school left me standing at the after school pick up spot for half an hour after all the other parents and children had left. Blake was in the classroom clearing every tiny piece of trash off the floor in response to his teacher’s request that everyone help pick up the room. Despite her repeatedly telling him he had done enough, he would not stop. Of course there was also the religious scrupulosity in high school. He would get stuck in a loop saying prayers over and over, trying to get them perfect, and this frequently made him late to school.
Fast forward to present day. Blake is eighteen, hoping to attend college next year, and working to combat depression. He still does little things that are OCD behavior, but he wants to leave them alone. It’s not a big deal, he says, that he washes his hands immediately if he touches money. So what if he washes his bed sheets because a piece of tissue that brushed up against the dog lands there? It’s not a problem for him if he repeats a prayer a time or two. And he cannot understand why his therapist is raising it as an issue at all right now.
“I don’t mind that I do things this way. Why are you bringing this up now?”
When You Have a History Like Yours…
“Blake,” says the therapist, “you’re right. The things you do now are not a big deal. Here’s the thing: if all you ever did was the things you do now, it would be fine. When you have a history like yours, though, where OCD has taken over your life, it’s downright scary to act like it’s not an issue.”
“I don’t understand. Are you telling me I’m not fixed?”
“It’s not a matter of fixed or not fixed. It’s about staying healthy. People with OCD who do the best after treatment work hard at staying healthy.”
“I understand what you’re saying – and I’m not interested.”
“Instead of rejecting this outright, I’m suggesting you consider the possible benefits to you of doing things to ensure your OCD doesn’t grow,” says the therapist.
“If you guys thought I was so sick, why didn’t you tell me before now? Has this all been a ploy to get me to do exposures?” Blake is downright angry.
“Blake, nobody is saying you are so sick. It is concerning to your parents and I that you accept your compulsions as they are and that you aren’t willing to entertain doing what it takes to protect yourself. Your attitude puts you at risk for relapse and we all want you to start college in the best way possible.”
I sit uncomfortably in my seat, taking this all in. We have tiptoed around Blake’s remaining compulsions for some time now. Getting him out of bed and functioning seemed a more pressing goal. However, the OCD has been the proverbial elephant in the room, mostly because it has been so under the radar and because Blake has been insistent on not looking at it. The therapist is right, though. In my experience treating OCD, my patients who stay healthiest remember that they have OCD and do maintenance work to keep things that way. The ones who want to pretend that it never happened or that it can be ignored tend to relapse more frequently. My son is in the camp of wanting to pretend it’s not there. He leaves the therapist’s office furious.
“I’m Tired of Being Weak and Scared”
Blake is argumentative and demanding on the walk to the car. He tells me that he realizes coming to therapy was all about trying to get him to deal with his OCD. I explain that this is definitely a part of it, but not the only reason, which I know he knows. I am concerned, I tell him, about his unwillingness to take a look at how it might benefit him to acknowledge his OCD and do maintenance work.
And then the tears come…
“I’ve been weak and scared my whole life,” he says. “I’m tired of being weak and scared. And now I’m crying, which proves how weak I am!”
At this point we can actually have a truly connected talk. My young man is not weak. He may feel scared, but he is actually one of the bravest people I’ve ever met. He has stood up to OCD demons frequently in the past. It was tough and exhausting work. I understand his reluctance to revisit that, which is maybe why it feels better to him to allow some rituals to hang around. At the same time, it is important that he understand what risk he might be putting himself at if he maintains this approach. This, I believe, will be his work in the weeks and months to come.
We are home from our family vacation. Michael is back at college and Blake, the hubby, and I returned home a little over a week ago. I noted in my previous post that Blake was actually enjoying things we did on vacation. In fact, the rest of us had been tired and had been ready to call off a trip to observe and swim with manatees. Blake told us how it had been a dream of his to participate in this activity. Blake, for whom depression is ever-present, rarely shares that he has any dreams, so we absolutely had to rally and make the adventure happen.
I am happy to follow up and share that the adventure was unbelievable. If you ever have the opportunity to float in the water with these gentle giants, I highly recommend it. We went out in the bay with a well-informed guide and captain. They taught us about manatees and what we could and could not do. After learning that we were not to touch, pursue, or dive after the manatees, we got quietly into the water where several were in the area, and we did a “dead man’s float.”
After a bit of time, a manatee surfaced under my feet and began to swim the length of my body. It was exhilarating, and it took everything in me not to erupt into a fit of giggles. Our little group was very patient and several manatees took interest in us, nuzzling their faces into ours and basically hanging out with us for over an hour. Our captain told us that our experience was not the norm – we had been given a gift.
When the day ended, and we changed back into our clothing, Michael, the hubby, and I thanked Blake for asserting himself. The manatees were a highlight of our time together. Blake agreed. For him, the boy with OCD who used to stay out of the water because it was contaminated, it was a dream come true. In the fog that mental illness has enveloped him in over these last few years, it was one more clear day.
The OCD in the Family family is on vacation. We are currently in Florida, in a small town on the Atlantic Ocean. The hubby, Michael, and Blake are in their rooms sleeping off the frenzied pace of the last five days. I walk the coast alone in what is unseasonably cold weather, but my heart is warmed by what I’ve experienced in my younger son on this journey.
Michael, our older son, has always enjoyed travel and is up for new adventures constantly. Blake, however, is a different story. He is usually extremely uncomfortable out of his usual environment. For as long as I can remember, he’s felt overwhelmed by new places, sounds, foods, smells, people, and, well – you name it. Compound this with Obsessive-Compulsive Disorder and, in the last two plus years, major depression, and you have a recipe for a very challenging family vacation experience. We’ve gone on many a vacation where Blake stayed behind in the hotel room or the car, or only went out with us after substantial begging (usually pleading to go back to the car to wait as soon as we’d allow it).
This Time, It’s Different
This vacation, however, has been different. Blake wasn’t particularly interested in going on this vacation. As usual, he came along because we were going. Then something started to happen that none of us could have predicted; he started to enjoy himself.
I first noticed it when we were at Epcot. If you’ve never been to this Walt Disney World park (as we never had before), it consists of a Future World (East and West) and a World Showcase, which features different countries around the world in street scenes, attractions, and food offerings. After a long, cold day in the park, I began to walk more quickly through some sections of countries in the World Showcase. Blake slowed me down, though.
“I don’t know if I’ll ever make it to all these countries,” Blake said. “I want to see everything I can while we are here.” Then he proceeded to walk down every corridor and alleyway he could find.
The next thing I noticed was that Blake picked out a meal for himself at the Kennedy Space Center. Blake, whose OCD often centers around food choices (or, should I say, problems with the food choices around him), at first said he would forgo eating anything at the Center’s cafeterias. He would wait and eat food he was comfortable with back in the car. The next thing I knew, he had a tray filled with food, and even a dessert of astronaut ice cream. He joined us at the cafeteria table and ate, something he hasn’t done in years.
Last night, he had a long discussion with the hubby about all the places in the world he would like to see. What? Blake wants to see the world? He named off basically every country in the world – the more different from our country, the more he seemed interested.
“What about traveling for leisure?” the hubby asked him.
“The thing is, I’m so uncomfortable traveling, I couldn’t relax.” Blake answered, “I may as well go somewhere I can see things and learn about different cultures.”
Manatees in the Morning
This morning, as Michael, the hubby, and I ate breakfast (Blake was sleeping in), we decided to call off our manatee excursion for the next day. It was too far away, we’d have to leave too early, and it was just too cold for swimming in rivers. Plus, we’d been moving at breakneck speed for several days. It would be nice to have one more leisurely day.
We took it as a given that Blake wouldn’t mind the cancellation. So the hubby went off to call the tour company and I took a breakfast tray in to Blake.
“Dad’s cancelling the manatee tour and swim for tomorrow,” I told Blake. “That way we can take it a little easier.”
Blake’s face contorted into a pained grimace.
“Are you reacting to the manatees?” I asked.
“Did you really want to swim with them?”
“More than anything,” he said, “but I can wait…if that’s what everyone else wants.”
“Let me see what I can do,” I said, as I bolted out of the room. It just rarely happens that Blake wants to do anything, and I wanted to reward his speaking up. I caught the hubby on the phone talking to the tour operator. I waved wildly for his attention, then told him what had occurred.
“Well, it looks like we’ll be coming after all,” he told the tour operator.
I went to tell Blake that the manatee adventure was on and the glee in his expression told me I’d done the right thing.
I Don’t Know What’s Going On, But I’ll Take It
I told the hubby how excited Blake was about the manatee tour. He and I marveled over the exciting things happening with our son on this vacation. The young man who normally doesn’t want to leave home, who only wants to read about the world instead of live in it, and who regularly says he dislikes himself and much of the world has had a few positive days where he seems to actually want to be here and to experience life.
Afterward, Blake and I perused the library at our lodging. He marveled over the books and wished he had more days here to sit and read. He supposed one thousand hours might do. As we passed through the hubby’s and my room, Blake shared his sentiments with his dad.
“You know, Dad, I’ve changed my mind about leisure vacations. Sometimes it would just be nice to sit and read a good book on vacation for hours on end.”
The big news this week is that Blake has decided to increase his SSRI (selective serotonin reuptake inhibitor) dosage. Seriously, it’s BIG news. I know. I know. For many on these medications, which tend to be the first line of defense in terms of medication for Obsessive-Compulsive Disorder (OCD), this is just a normal occurrence. Sometimes you go up in dosage. Some times you go down. That’s not the case for Blake.
Blake has been on the same dose of his SSRI since he was thirteen years old (13). He’s eighteen(18) now, in case you don’t know. That’s five years on the same dose. That’s more than two years of feeling he’d be better off dead. More than two years of people begging him to increase his dosage. His psychiatrist has begged, his pediatrician has begged him, his father and I have begged him. His therapist has encouraged him and challenged his reasoning on why he won’t increase his dosage.
“I don’t like being on medication,” says Blake. “It doesn’t help me.”
“How do you know it doesn’t help?” asks the therapist. “Maybe you’re not on a therapeutic dosage for you.”
“It doesn’t help. I don’t want to change it. It won’t help me.”
“How do you know if you haven’t tried?”
“I just don’t want to.”
Last week, the conversation came up again.
“Okay, I’ll give it a try,” he says, with little fanfare or need for cajoling.
He goes home and calls his psychiatrist and has begun a higher dose. I don’t know if it will make a difference at all in his major depression or in his OCD, but it is a big move for Blake to even try. So far, he is tolerating the increase well; however it has only been two days.
In other news, his therapist asked him this week how his week was. He’d been wondering how depressed Blake had felt in the past week.
“It’s been a good week,” remarks Blake. I haven’t heard him say that in – well, I can’t recall how long.
“So, it was a good week not to get hit by a bus?” asks his therapist.
“It was definitely a good week not to get hit by a bus.”
We pull into the parking lot and get out of the car. I notice that I’ve parked kind of crooked, so I climb back in, start the car up again, and straighten it out. Blake raises a hand to signal that I’m okay now. I notice the glove. It’s stretched out and missing the tip of the thumb where Blake has pulled a thread and the glove has begun to unravel.
As I climb out of the car and we make our way to the therapist’s office, I notice that both gloves are misshapen. The wrists sit limply against Blake’s skin, like they’ve been tugged at too many times and any elasticity is long gone. Blake is dressed in a short sleeve t-shirt and cold weather gloves. I think he stands out in this appearance, particularly with his thumb halfway protruding from the shredded threads. I don’t say anything. I know better.
I gave these gloves to Blake a few winters ago. His hands get especially chapped and painful for a few months each year. He slathers them in petroleum jelly at night and pulls the gloves on to keep the goop from getting all over everything else. Today he’s wearing them out of the house; his hands must feel extra painful if he’s wearing the gloves during the daytime.
I Just Wash More Than Other People
As we sit in the therapist’s waiting room, I am certain that The Doc is going to comment on the gloves. Anyone who has ever dealt with OCD treatment knows that embracing uncertainty is paramount, but there are few things I can feel more confidently certain about than the therapist honing in on these gloves. In a few moments, my prediction is confirmed. The Doc steps out into the waiting room and, almost immediately notices Blake’s gloved hands. He steps closer to Blake.
“What’s this?” he asks.
“Oh,” says Blake casually, “my hands get really chapped and sore this time of year.”
“Why is that?” the therapist wonders.
“I don’t know. It’s just the weather.”
“My hands don’t do that.” He holds out his own hands.
Blake removes his gloves and displays them for us. They are red and raw. It’s obvious they are painful.
“Have you been washing a lot?”
“My hands have always gotten like this in the winter.”
“How long has that been going on?” asks The Doc.
“Always,” says Blake.
Indeed, I don’t think Blake can remember a winter where his hands weren’t painful, raw, or bleeding. His hand washing at age six was my first big sign that he had OCD. It was something I’d hoped would go away. Despite education and treatment, it is still here, twelve years later. Blake knows nothing but painful winter hands.
“Maybe you’re washing too much,” suggests the therapist.
“It’s not that,” Blake says. “I just wash more than other people, that’s all, but that’s not why. The weather just does this to my hands.”
“You know,” suggests the therapist, thoughtfully, “you could try an experiment. You could decrease or stop washing and see what happens. Then you’d know if it’s the weather or the washing.”
“I don’t want to. That’s disgusting.”
To Purchase New Gloves or Not
After therapy, as we drive home, I note to Blake that his gloves have seen better days. It’s time to toss this pair out.
“But they’re the only pair I have,” he laments. “Do they really look that bad?”
“Yes, they do.”
Blake reluctantly tosses his gloves in a trash can later that day and sadly wonders what he will do to protect his hands. I ponder whether I should buy him a new pair. My inclination is to purchase them (mind you, we live somewhere where the daytime weather rarely gets below the 50’s Fahrenheit), but I wonder whether I’m accommodating his hand washing behavior if I do. He hasn’t asked for new gloves, nor has he said anything about going to purchase them himself. For now, I’m waiting.
This question from Blake’s therapist takes me by surprise and throws me off balance for a moment. Blake has just walked out of the room, shutting the door behind him. Nature calling. I’m just finishing paying for the session, thinking I’m about to walk out the door, too. The therapist isn’t quite done yet.
“What do you think?” he asks, and then he points out, “He’s talking about serious stuff now.”
He’s correct. Blake only started coming to therapy when he wanted to take some control of the interventions his therapist, his dad, and I were implementing. He was angry. He came to bargain. In recent sessions, he’s talked about depression, his dislike for himself – just the mere concept of “Blake,” about his disconnection from the world. Today was no exception and, as has begun to be our routine, I sat like a fly on the wall watching the interaction between Blake and The Doc, wondering what I was doing in there. Although the therapist in me is fascinated by observing what’s going on.
It’s Not About Me, Right?
We’ve been seeing this therapist in hopes that our 18-year-old can overcome his OCD and severe depression and ready himself to live in the world. So I just didn’t expect it when the therapist asked about me.
“I have good days and not so good days,” I answer.
“Well that’s a pretty non-specific answer,” the therapist says with a smile.
“I worry about him,” I say, “but I’m learning patience.”
The truth is, I’m kind of disconnected about how I am. I’ve been so mesmerized by the therapy session, I lost myself a bit. It’s only later in the day, as I ponder the question, “More importantly, how are you doing?” that I think over my frustration at watching my son climb back into bed multiple times each morning. It’s later that I recall the heartbreak at hearing my son talk about how life isn’t worth the good moments when he considers how awful the bad moments are. It’s later that I remember part of me sinking inside as I watch my son wash his hands immediately after handling money or tiptoeing around areas that the dogs might have contaminated.
At the same time, I’m touched by The Doc’s inquiry. As much as my son is suffering, family members are, themselves, affected when their loved one has OCD, depression, or other mental illnesses. If we aren’t directly involved in rituals, or trying to get them out of bed, we are worrying about them. So I’m appreciative of this simple act of kindness and caring. It resonates in me. It reminds me that we family members have to remember to care for ourselves in the face of our loved ones’ struggles. We have to be mindful of our own well-being. If we aren’t, we can become impatient, bitter, angry – basically of little use in this war called mental illness.
So, thank you, kind therapist, for reminding me that I matter, too. It opened something up inside of me and I feel just a little more alive and grounded. I feel less stuck in the mess with my son, and more like myself. And this morning, when I allowed myself to take a long hike in the nearby mountains, I was just a little more open to taking in the scenery and appreciating it, instead of having the specter of depression and OCD hanging over me. Yes, I matter, too.