OCD expert Elizabeth McIngvale, Ph.D., shares personal OCD journey, treatment options for patients
At the age of 12, Elizabeth McIngvale, Ph.D., was diagnosed with severe obsessive compulsive disorder (OCD), a chronic and debilitating mental illness that causes uncontrollable, recurring thoughts and behaviors. About 1 in 100 adults—or between 2 and 3 million adults in the United States—currently has OCD, according to the International OCD Foundation. That is roughly the same amount of people living in the city of Houston.
As an assistant professor in the Menninger Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine (BCM) and founder of the Peace of Mind Foundation, a nonprofit foundation for OCD, McIngvale (daughter of Jim ‘Mattress Mack’ McIngvale) has dedicated her career to helping other people suffering from OCD regain control of their lives.
Shanley Pierce: You were diagnosed with OCD when you were 12 years old. Tell me about your personal experience with OCD.
Elizabeth McIngvale: I grew up here in Houston. We searched tirelessly for treatment. Obviously, we looked at the Texas Medical Center, being the biggest medical center in the world, and really wanted to get and find the care that I needed. We were hopeful that we could find it here, but at the time it just didn’t exist.
Three years later, my OCD had gotten worse. I continued to be more disabled by my illness, and it certainly impacted every facet and quality of life for me. My parents ended up finding The Menninger Clinic, which at the time was in Topeka, Kansas. I went to The Menninger Clinic at 15, spent about 90 days there and learned how to manage my symptoms. For the first time in a long time, my hope was restored in the belief that I could actually get better and that help existed for me. I left a different person. I really, for the first time, finally could manage my symptoms. I was functioning well. It’s been a journey ever since then.
SP: How did OCD control your life?
EM: When I was first diagnosed, a lot of typical OCD was around contamination—fear that I was going to get contaminated, fears of different illnesses and diseases. More importantly for me, it wasn’t a fear that I’d become contaminated, but that I would pass it on and contaminate someone else.
Secondly, I always struggled with scrupulosity, which is the religious form of OCD [scrupulous individuals worry that something they thought, said or did might violate religious doctrine]. In addition to that, I struggled a lot with unwanted intrusive thoughts. These were unwanted sexual intrusive thoughts, unwanted harming intrusive thoughts. This the form of OCD that isn’t talked about as much and is more stigmatized. It carries a lot of shame and guilt for individuals who live with this category or subtype.
I struggled a lot with all of those. I think, for me, the contamination was something that everybody could see. My parents could observe me getting stuck in the shower for six hours or being stuck over the sink. The scrupulosity they could observe a little bit because they would see when I was engaging in prayer, doing the sign of the cross or certain behaviors. But the unwanted intrusive thoughts—I really had to deal with them on my own, internally. They were extremely disturbing. A lot of the rituals I did do were things like asking for reassurance, confessing or asking if things were okay to my mother.
SP: Can you think of a moment when your OCD was at its worst?
EM: I don’t know that I can pinpoint it to one. During the time of my severe suffering, around 7th or 8th grade, everything was a living nightmare. I woke up in the morning and wished that I wouldn’t have woken up. I engaged in rituals from the second I opened my eyes until I finally was able to fall back asleep that next evening. I wanted so badly to be out of this nightmare, but I didn’t see the possibility of that.
We went to providers here in town and we were told the same thing—that no one’s ever seen a case as severe as mine, there’s not help available for me, that my parents should accept that I’ll live in a mental hospital the rest of my life. I really didn’t believe help was on the horizon. I didn’t actually even know that help existed for me or for the suffering I was going through.
The days that stand out the most were the ones when I was begging family members to take my life. My faith was a protective factor for me and prevented me from acting on that, but I would ask them to do it because my rationale was that they would be forgiven. I was in so much pain and suffering that I had no desire to live because I didn’t believe my life could be one worth living. Little did I know back then that there is so much hope and so much to live for. This illness is so manageable, as are most mental health conditions. But when you’re in the throes of it, what I remember the most is the disability, the pain and the suffering that I had to endure every day.
SP: What types of rituals did you engage in?
EM: Typically, a lot of those were washing, praying or confessing, but oftentimes, individuals with OCD will have nightmares or will be woken up with an intrusive thought and will engage in some sort of behavior to get rid of that, whether that’s a checking behavior or hand-washing. For me, at the time, there was a lot of contamination, and that was the focus of my illness. Oftentimes, I would wake up triggered or anxious and would engage in washing or cleaning rituals.
SP: I understand there are various forms of cognitive behavior therapies to treat OCD, including exposure with response prevention (ERP), which has been proven to be highly effective.
EM: ERP is exactly what it sounds like. We slowly expose ourselves to what we’re afraid of and we prevent ritualizing. That’s really important when we talk about OCD treatment. Exposure therapy is very effective for PTSD [post-traumatic stress disorder], for phobias, for panic disorders, etc., but they often don’t engage in rituals. The exposure itself is effective, but for OCD, that’s not the case. If touching a doorknob is an exposure for you because you’re afraid of touching [it] due to contamination concerns, then that’s wonderful, but if you go down the hall and wash your hands, you’ve actually reinforced the OCD and given it more power, so we have to do that second part, which is the RP of ERP, the response prevention.
We’re going to ask you to touch the doorknob, not wash your hands and sit with that anxiety. What you learn is that anxiety comes and goes. It will go away. It’ll decrease and you’ll be able to fully function and live a manageable life without engaging in rituals. What happens is, when we change the behavior, stop ritualizing and purposely expose ourselves to our fears and situations that we’ve been avoiding for a long time, the OCD has less power and comes with less frequency. It truly does change your thoughts and the way you react to them.
SP: Exactly how effective is ERP for OCD?
EM: Exposure with response prevention is the most effective and the gold standard for first-line treatment for OCD. It has a 75 to 85 percent efficacy rate, which makes it one of the most effective mental health treatments available. There is help available and there is hope for everyone with mental health conditions, OCD in particular. We know this treatment is successful. We know it works. I certainly wouldn’t be doing what I do for a living if I didn’t believe it worked. I’ve made an entire profession and my entire career out of it because I know, personally, that this treatment works.
Oftentimes, ERP is used in combination with specific medications for OCD. People will use medication and ERP to be able to effectively manage their symptoms, but ERP is absolutely required and is necessary. It’s the behavioral intervention that we need to do in order to reduce OCD symptoms permanently.
There’s always other treatments. Right here at Baylor College of Medicine, we have ERP treatments, ERP providers, psychiatrists who provide the medical options that are effective for OCD, but then we also have incredible research going on around treatments and new medications. Dr. [Wayne] Goodman, who is the chair of our department, is an OCD specialist, so we’re lucky to have that on our agenda. He specializes in treatment refractory OCD and the application of devices, such as deep brain stimulation.
SP: How long does ERP therapy typically take to treat OCD? How does it help patients manage their OCD?
EM: On average, we should see people get better in about 12 to 16 weeks. Of course, depending on severity and the type of OCD somebody lives with, that can change. I’ve been in therapy most of my life and I’ll continue going to therapy because I enjoy having a therapist who holds me accountable and will do some higher level exposures with me, but the reality is in 12 to 16 weeks, we should see a big decrease in OCD symptoms.
Once you learn the tools, you’ll do it every day for the rest of your life. I talk about ERP treatment like someone who uses insulin. Even when their diabetes is well managed, they may still need insulin. On some days, depending on what they eat or what exercise they’re doing, they may need to adjust the levels they’re getting in order to continue to manage their symptoms. OCD is the same way.
SP: How do you continue to manage your OCD?
EM: Every day, I carry my backpack with my ERP tools in it. Sometimes I’ll have to use them more frequently than others, depending on the triggers, the day, the situation or my vulnerabilities that could impact my OCD. But it’s about management. I think a lot of people look at me now and think, ‘Well, she has a job. She lives independently. She’s doing well, so she must not have OCD anymore.’ That’s certainly not the case. I still live with OCD. I still live with intrusive thoughts every day of my life, but I’ve learned what tools I can use to help me be able to still function, live a successful life and appropriately manage and keep the intrusive thoughts at bay.
SP: It must feel liberating to regain control of your life again.
EM: The liberating part is two-fold. It’s about when you … realize you have the control and not the illness, but also when you become your own therapist. I always tell people that my job is not to be the therapist who gives you this groundbreaking information. My job is to teach you to be your own therapist. At the end of the day, that’s what you have to be. It is so liberating to know you get to control this illness.
SP: What is the biggest misconception about OCD?
EM: OCD is not an adjective. You hear so many people say, “You should see my coworker’s desk. They’re so OCD.” “You should see my aunt when it comes to cleaning her kitchen. She’s so OCD.” People aren’t “so OCD.”
It has been stigmatized and devalued because of society. People line their Skittles up in a certain order and they hashtag OCD. People who are organized or have a certain way of doing things or being particular means they have OCD. They use that term flippantly. The reality is that’s not what OCD is. OCD is a real disorder that affects real lives and has a terrible impact if it’s not treated.
SP: As someone whose life had been so greatly affected by OCD, it must be incredibly rewarding to provide care for other OCD patients.
EM: It’s everything to me. It’s why I do what I do. It’s why I continue to fight my fight and keep going. For the first time in my life, I can truly say that there’s a purpose to my pain. I don’t wish OCD upon anyone. I certainly would do anything to get rid of my OCD and anyone else’s, but I also know that my suffering isn’t something that had no good come out of it. I’ve been able to take my story and take my history and make it my passion, my life mission. To be sitting in the Texas Medical Center right now, looking out over the campus, and to know that I get to be right in the place providing help to people where I needed it the most, that’s pretty full circle to me.
SP: What else should people know about OCD and treatment options?
EM: When I was first diagnosed and went to Menninger, one of the things that bothered me was the fact that my family spent so much money and had so many incredible resources and that’s what it took to get me the help that I need. I couldn’t really accept the fact that, for other people, they weren’t going to get the help they need just because access didn’t exist for them. I made it my life mission and it has turned into my career.
Right here at BCM in the psychiatry department, we have an incredible OCD team comprised of Dr. Goodman, who’s a world-renowned psychiatrist in the field; Dr. Stuart, who’s a world-renowned psychologist in the field; myself and other providers to provide evidence-based care. For the first time in Houston, people can get incredible effective OCD treatment and we take insurance. That’s a huge thing. For the first time, people can pay a co-pay and get the treatment they need.
When I was 15 and I knew that something had to be done, this was what I wanted to do: to be able to increase access for people suffering and make sure they got the treatment that works.