When Someone Says NO to OCD Treatment

Hello, Friend. When OCD is in your life—whether you’re an OCD Warrior actively managing your own obsessions and compulsions or you’re an OCD Caregiver or Champion supporting someone you love with OCD—chances are good that you’ve had times when you said, “This just isn’t working.”

You might tell a very specific OCD story. 

It’s a story of desperately wanting things to get better, and the  massive and sometimes futile efforts to find the right help.

Your OCD story may include the years you spent in pain before you were diagnosed, or the years you invested saying yes to treatments prescribed by people you trusted that really made things worse.

It’s a story you would not tell if diabetes or breast cancer or even ADHD were in your life rather than OCD.

Why is getting stuck such a universal part of the OCD story? That’s the topic of this blog post.

Almost a month ago, I read an article called Letting Naomi Die. The front cover of the magazine says, “ Treatment wasn’t helping her anorexia, so doctors allowed her to stop—no matter the consequences. But is a palliative approach to mental illness really ethical?

I’ll leave a link so you can read the article for yourself.

Naomi struggled with eating disorders since childhood. She’s tried every treatment, and nothing brought the hoped-for cure..

Then here’s what the article says:

Naomi collapsed into her 30s. She had no hobbies and no friends. She had become a kind of professional patient: her whole life whittled down to the airless world of her diseases, the logistical management of her self-denial. 

Everything was epic drama, but also staggeringly boring. To Naomi, her doomed attempts to get well had started to feel less tragic and more ridiculous. It wasn’t so much that she wanted to be dead, at least most of the time. It was that she could no longer stand anyone trying to cure her — especially because the “cures” were always the same and never worked. 

She told the author, “I’ll either die of anorexia or I’ll die of suicide,” 

Then one day a nurse in her inpatient treatment center gave her an article about palliative care for anorexia.

She emailed the article’s author, saying “Dear Dr. Yager, After 20 years of trying the same thing over and over again and expecting different results, I am tired of fighting the system.”

Naomi wanted to explore his palliative psychiatric services. She was willing to take treatment that would make her days better, like IV electrolytes. She didn’t want any more curative treatment. No inpatient care. No forced weighing or feeding. No more efforts to be fixed. 

This article hit my soul. I’ve been digesting it for about a month and I would like to share a few thoughts.

As a physician I see the tremendous value that hospice and palliative care professionals offer. 

For some of my own patients with advanced breast cancer, there comes a time when it makes sense to shift from the goal of having more days in their life to more comfort and joy in their days.

These can be heart-wrenching choices. 

I remember a dinner party in which the host—a primary care physician—talked about a conversation he had with some parents. The parents told him they just learned that their 6-year-old son had a third recurrence of an aggressive brain cancer. 

The child’s oncologist found a new treatment trial. The parents asked the doctor—my host. “What should they do? Leave family and friends and move to Texas for more treatment—or should they go to Disneyland?”

We asked, “What did you advise” 

He said, “Tough choice. I supported the parents hunch that Disneyland was their better choice.”

Naomi wanted the Disneyland choice for her anorexia.

I had to wonder: what if Naomi had OCD rather than anorexia?

How many people with OCD give up on OCD treatment, and want the Disneyland plan?

What happens when someone with OCD says, “Enough! No more treatment.” Maybe this person is you. Maybe the person saying that is someone you love. I’ve been there myself watching my son wrestle with OCD.

The truth is that OCD is treatable. It’s manageable. 

How do you break through the despair and be open to even the possibility for a better tomorrow?

It begins with telling the truth of where you are today and understanding how and why people with OCD get stuck. Why they make the choice to give up on treatment. 

That’s really what I would like to address today.  

Here are the top three reasons I see: 

Number 1. Health care professionals’ limited understanding of OCD

Yes, I learned about OCD in my psychiatry rotation in medical school. It was just a passing mention, “Yes, people who wash their hands and count things are hard to treat.” 

Even trained therapists are often not equipped to ask the kinds of questions that lead to the diagnosis of OCD.  

Let me go back and read from this article. “The doctor remembers Naomi saying, “I have these obsessions. They won’t let go of me. Nothing they have ever given to me in therapy has ever changed those internal, infernal thoughts.” 

Don’t you love that language—-internal, infernal thoughts. 

Did your OCD alarm go off as I read those words?

According to the article Naomi  carries the diagnosis of eating disorders and bipolar disorder. It’s possible that over her many years of treatment, one of the many health care professionals involved with Naomi’s care might have considered the diagnosis of OCD and ruled it out. 

However, if I were a betting person, I would wager that not one of them asked, “Are we missing something here? Could OCD be part of Naomi’s clinical picture?” 

When healthcare professionals don’t ask, “Could this be OCD?”, they don’t diagnose it. When they don’t diagnose it, they can’t offer treatment. If they don’’t invest in their own professional development, they might offer treatment that doesn’t work with OCD.

There is some good news for you. You’re listening to this podcast because you asked the question, “Is this OCD?” You know that the evidence-based treatment is Exposure and Response Prevention or ERP.  I’ll leave a link to my podcast episode about what ERP is, and another link to NOCD where you can find a trained ERP practicioner.

2. Our limited understanding about what happens in the nervous system that leads to the obsessions and compulsions.

My son has OCD; I don’t. Still, when he describes his obsessive thoughts, I can honestly say I’ve had every one myself.  My son and I are having a shared human experience. 

So, why is it that I can have a thought, and let it go, when my son takes the same thought for a drive around and around a thought traffic circle for hours?

If I were to sit down with even the most sophisticated and knowledgable neuroscientist and ask, “How are my son and I different?” the answers I get today are not very satisfying. They’re incomplete. Most importantly, they don’t help my son live a better life or guide me to be a more effective parent.

I remember being at a mommy group lead by a great parenting coach. One day a mom said, “Sometimes I’m so exhausted by the constant power struggles with my daughter that I fantasies about just leaving my daughter in the grocery store cart and driving off without her.” We all laughed. We’d all been there. Then we moved on.

Someone with OCD might not be able to move on. They might judge a thought like this. “What kind of terrible person and I to think this thought?” They might say, “I thought it, so it must be true.” They might have the fear that one day they would really leave their child at the grocery store. They might be concerned enough so they might never bring their child to the grocery store, or maybe avoid grocery stores all together. 

Imagine the Grand Canyon. On one side there’s the practical, actionable interventions this mom could use to manage her brain and manage her OCD. One the other side there’s a body of scientific knowledge about OCD. 

Our shared vision is that one day  we can build a bridge that spans this gap. Science informs treatment. 

There are interesting possible clues all around that might contribute to this bridge’s construction. 

I read an article about how the parasite toxoplasma gondii affects the brain. If you’ve ever been pregnant, you know that you have this parasite to thank for your 9-month break from kitty litter duty. If your cat is infected, eggs—called oocysts— pass into their feces. You could become infected through exposure to cat poop, and the infection is highly dangerous to developing fetuses.

Here’s something about it you might not know. The toxoplasma parasite has 5 stages in its life cycle. The stage in which the parasites reproduce only happen in one place: the cat’s gut.

Mice can become infected with this parasite as they walk around cat poop. The infection changes their brains. It turns out that infected mice lose their fear of cats. They scurry more. These behavioral changes triggered by the infection make it more likely that a cat will eat an infected mouse, and then allow the parasite to reproduce. You have to marvel at the sophisticated engineering that protects this parasite’s survival.

Could a pathogen trigger observed OCD behaviors? Sometimes kids diagnosed with a strep infection will suddenly develop OCD. It’s called PANDAS.

When Crohn first described what we now call Crohn’s disease, he first thought that it was caused by an infection. Goats get a disease that looks like ulcerative colitis that’s successfully treated with antibiotic given for TB. There are hotspots of Multiple Sclerosis. Could infection play a role in triggering OCD?

What role could the nervous system play in the development of treatment of OCD. 

Safety and danger are central themes in OCD.

We’re in the middle of awards season. Many celebrities travel with security; you just don’t see them. Prince once brought this bodyguard to stage when he accepted a music award.

What if people with OCD like my son have their own bodyguards that go everywhere with them. How and why does this personal bodyguard step forward?

When our lives are threatened, the autonomic nervous system prepared the body to fight, flee or freeze. What role might the autonomic nervous system play in either the development or the treatment of ocd?

People can acquire the skills to calm the  nervous system with body-based somatic treatments. Will this be part of the OCD treatment protocol?

What can we learn from people who treat trauma and PTSD. I have witnessed with my own eyes the transformational power of a treatment that involves rapid eye movement or any signals that cross from one side of the brain to another. 

Maybe breakthroughs in substance abuse or eating disorders can help crack the OCD code. 

3. OCD Spins a Sticky Web of Control

If you were to sit down at the kitchen table and ask OCD, “What do you want? Why are you here” OCD might say, “I want to keep Billy safe. Billy can be clueless at times, so I need to take over. I’ll do anything to protect Billy.”

If you’re an OCD Warrior, you know that OCD wants to control your life.

Even toxoplasmosa’s cat and mouse shenanigans are nothing  compared to OCD. OCD takes control of its host--the person with OCD, their environment, their schedule. They even take control of the people who love them.

How does OCD do it?

First, OCD has a sneaky way of tapping onto the brain’s vulnerability. 

Think of the brain as a 3-storey house. 

On the top floor, there’s your prefrontal cortex. This is the part of the brain that asks the best questions and comes up with the best solutions

In the basement there’s your reptile brain. This is the part of the brain that is active when your life is threatened. The reptile brain only knows how to do three things: fight, flee and freeze. So, when the brain registers possible danger, it tells the autonomic nervous system to prepare the body to escape death. 

When you’re fighting for your life, you have limited access to the upstairs prefrontal cortex-the part of the brain that asks the best questions and arrives at the best answers. 

So, when OCD offers thoughts of danger, it’s like someone’s pointing a gun at you. You don’t stop and ask, “Is that a real gun or a toy gun.” You run! You ask questions later.  

You want and need your prefrontal cortex to manage OCD and create the life you want. OCD makes it harder for you to access it.

My son has OCD. I was diagnosed with ADHD when I was 40.

These two flavors of neurodiversity impact lives in very different ways.

I could live a normal life with undiagnosed and untreated ADHD—or what looked like a normal life. Sure, I might miss a flight if I went on an idea safari and lost track of time. I once almost missed a flight sitting in the boarding area. However, ADHD kept me from a great life. I’d start projects and then get bored and jump to another project. But throughout it all, I had access to my prefrontal cortex at all times. I could bring my highest and best self to managing my brain.

That’s not how it is with for people with OCD. It’s like their brain is hogtied and blindfolded by OCD. They have limited access to the part of the brain that will help them take back control over their lives. This is what OCD is so disabling. This is what keeps people with OCD from leading normal lives.

That’s just step 1.    

After OCD has its hooks it, it gaslights you. It delivers messages that you cannot believe what you see with your own eyes and hear with your own ears. It tells you that perception is off, your judgment is off, and your memory is off. OCD takes control of its host by sowing seeds of doubt. Some people call OCD the doubting disease.

The OCD gaslighter says, “You know you can’t trust yourself . Trust me instead.”

Then OCD grooms you. It asks you to do one small thing. Then another. And another. Over time, the boundary between what’s acceptable and what’s not acceptable shifts. 

OCD takes control over the environment, over how the host spends time and over the activities that are allowed,

Once OCD has control over its host—the person who owns the brain where OCD set up control—then it’s time to entice others into its web of control

If you were trying to get control over someone’s parents or partner, how would you do do it? You might prey on the human propensity to protect people we love, and do what we can when they’re in pain. These are programmed into primitive parts of the brain.

That’s just what OCD does. OCD now grooms family members. Before long, family members become part of the compulsions.

I saw this happen in my own home.

I saw the way OCD took control of my family. 

My son struggles with moral OCD themes. He has obsessive thoughts about how he lied or cheated or let down a friend. These thoughts would make him feel very anxious. To get some relief, he would replay scenes from his day over and over. He would make confessions or offer apologies. 

Over time he reached out to me for help. He wanted me to sort through the sandbox of what he said and did to find the broken shards of glass—the thing that hurt or offended others. Then I offered him reassurances.

Now OCD had control over me. By sifting through questionable behavior and offering reassurances I became part of my son’s compulsions without knowing it—even after he was diagnosed with OCD!

Once I figured this out, the obvious solution was getting my son under the care of an OCD practitioner. He resisted. I pushed harder. I was trying to control my son!

Before long, my son and I weren’t on the same team battling OCD. Now we were battling each other.

I imagined OCD celebrating this conflict between my son and me. It just made it easier for OCD to maintain control.

And OCD has a final trick up its sleeve. OCD tells you there is no hope. It tells you that you will not escape its power.  

Your future is going to be more of the same—only worse.

And that’s the thought that leads to despair and hopelessness. 

It’s also a lie. 

You see how OCD is a formidable foe!

That doesn’t mean you’re defeated . You’re stuck in OCD’s web of control. You just haven’t found ways of getting unstuck. 

Yes some people with OCD choose the Disneyland option when they’re stuck.

If you know anyone who thinks they cannot take another day of the pain, take action. Have them call 988.

This is not what most people want. They just want a way to get unstuck from OCD’s web of control. 

Here’s the truth. 

You didn’t do any thing wrong.

You are not broken.

This is not a hopeless situation. 

I will tell you that there is a way out. I found it for myself. I’ve helped other families find it. You CAN be freed from OCD.

So, let’s get back to the bigger question: what do you do when you think, “Nothing is working.”

It begins by knowing that you’re not alone. Of the people I know touched by OCD, one hundred percent of them tell me stories about the many ways they were let down. Of the many doctors they trusted who missed the diagnosis of OCD. Of the many well-intentioned health care professionals who offered treatments that didn’t work. Of the well-intended family and friends who said things that made things worse rather than better. 

However, sometimes the best first step to getting to where you want to go is just stopping, seeing where you are now and considering how you go there. 

So, I invite you to sit with the reality that your OCD story includes disappointment, and that is completely normal.

Tell your OCD story. Maybe you take out a pencil and paper and physically write it. I’ve attached a worksheet called MY OCD Story you can download and write your story. I recommend physically writing instead of keyboarding. I think it opens up different neural circuits.  

If you prefer to tell the story with spoken words, you can dictate into your phone or maybe tell a friend.

When did you first notice OCD-related behaviors? What happened next? To whom did you reach for help? Who let you down?

It doesn’t have to be perfect. Just get things from your head onto paper. It could be stream of consiousness. 

Ellen said, “It was like I was vomiting on paper. Here’s what she wrote: “I’ve tried EVERYTHING. Nothing’s worked in the past so nothing will work in the future. I can’t see a way out. My therapists told me there’s hope for a better tomorrow. I don’t believe her.” 

If you’re an OCD Warrior, your story will be focussed on the ways in which OCD has control over you. Maybe it’s the story about how people who love you are trying to control you.

If you’re an OCD Champion Caregiver your story is still how OCD impacts YOUR life. What’s it like for you to witness someone you love in pain?

You might notice strong feelings like anger or betrayal or disappointment. Give yourself permission to feel these feelings in a safe way in a safe place. Maybe you do this in a therapy session. Let those tears flow. Punch a pillow. Think about what you would say to the doctor who missed the diagnosis or the friend who said to you, “Why don’t you just stop”

Step #2 Give OCD a chance to tell their story. 

Just recently I was at my book group, and the leader asked,, “What’s your most memorable costume you wore to a costume party?” 

I immediately knew the answer! I was once invited to a costume party in which guests were invited to dress as the embarrassing, shameful parts of themselves they work so hard to hide.

One person came dressed in a fat suit; he’s never been overweight, but he’s terrified that one day he’ll be obese like his dad. He carried a bag of junk food, and he regularly delivered fistfuls of food to his face—much of which came out as he chewed with an open mouth.

Another came dressed as a judge. He leaned into his role at the party and offered zingers, like, “That’s the stupidest idea I’ve ever heard.” Or, “Do you have any mirrors in your house?”

I came as a stick of dynamite. I try to control my explosive anger. I also leaned into my character at the party. If people came up to me, I would yell at them. 

We party goers talked about how liberating this was. There was freedom in inviting the unwanted parts ourselves to the party and giving them a voice and letting them be seen.  

How about giving the pencil to OCD and letting it them tell their story. Maybe you print out a second worksheet. Go through the same scenes in thew story, and allow OCD to offer their perspective.

Third, prove to OCD and to yourself that you are NOT stuck.  

You can take one tiny step today as evidence. Find something small OCD wants you to say yes to and you say no.

If you’re coming up blank, here are two specific ideas.

Contribute to the OCD Confessions Campaign. OCD wants you to keep secrets. Break the silence. Here’s how. Get a postcard. Write down a secret that you might not have shared with anyone. Whether you’re an OCD Warrior or and OCD Caregiver, take a postcard and anonymously write down one secret about OCD, no matter how shameful or humiliating. Get out your markers and unleash the artist-within. Then mail it in anonymously.  I’ll leave a link so you can find the address.. Not only will it help you; it will also help others so that they can see that they are not alone. 

Enroll in the Get Unstuck from OCD 5-day challenge. Over 5 days you’ll discover self self-coaching tips that can help you get unstuck

If you’ve ever tried to unwind a ball of knotted charger wires, or a knotted extension cord, it can seem overwhelming. There’s a way to do it, though. 

If you are stuck in the web of control of OCD, you might think you’ve tried everything. In this 5 day challenge, yo’ll see how you can free just one pinkie. Then you can use the same process to free your hand and then your arm and then your torso. 

You will have evidence that you don’t need to stay stuck where you are forever!

If OCD is in your life, you get to choose YOUR future. Many OCD Warriors can’t see any way out of the pain except suicide. If you know someone in that situation take this seriously. Call 988. Get help.

If you’re an OCD Warrior and you’re choosing the Disneyland option, this is your right, just like it’s Naomi’s right. 

Naomi saw two choices: more of the same treatment she’s been getting, or no treatment.

Please know, though, that for OCD there are more than two choices. Explore these other choices before you decide.

If you’re an OCD Champion Caregiver, please remember that the only person you can control is yourself. As much as you might want your OCD Warrior to make better choices, your way of getting unstuck is releasing control. You focus on better choices YOU can make.

Thanks for stopping by. I hope that you found value inn this episode. If so, please share this with family, friends and community members.