Entering therapy to treat one specific issue while you’re uncertain about multiple other things can be intimidating, and this can feel especially true if you’re in the process of navigating your sexual or gender identity, if you’re wondering whether you might be neurodivergent, or if you’re contending with multiple identity questions at once.). If you want to seek help for obsessive-compulsive disorder (OCD), it might seem like you must have everything else figured out first.
Because OCD is an ego-dystonic condition, meaning the thoughts and obsessions it creates are in opposition to your actual values and desires, it can also clash with your sense of self in complex ways that then muddy the waters even more. “OCD makes a pretty direct attack on most people’s identities,” says April Kilduff, LPCC, who has been a therapist specializing in OCD for over almost 2 decades, with a particular focus on working with clients who are neurodivergent and part of the LGBTQ+ community.
In this interview, Kilduff describes how OCD can complicate the experience of figuring out who you are, and debunks the myth that you need to be certain of your identity in order to benefit from OCD treatment.
How can OCD influence a person’s sense of identity?
Identity is closely linked to our values, and OCD is especially good at [going] after that.
For example, if you’re someone who really values health and cleanliness, you might have contamination OCD (a subtype that causes an intense fear of germs, illness, or becoming “contaminated” by certain substances, people, or environments). If you’re someone who really loves kids, OCD is going to try to get you with pedophilia OCD (POCD) (a subtype that causes intrusive, unwanted thoughts, images, bodily sensations, or fears related to minors), or harm OCD (a subtype that causes intrusive thoughts and urges related to hurting yourself or others).
If you just boil it all down, most people with OCD are just afraid they’re bad people. Whether it’s because they’re afraid they had a hit and run accident they can’t remember, or poisoned someone accidentally, or hurt someone’s feelings. And that’s because most of us want to be good people.
Do people need to have their identities totally figured out in order to benefit from OCD therapy?
No, because I don’t even think that’s humanly possible. I don’t believe identity is fixed or that there’s a true self we can all find. Identity is dynamic, and we are going to grow and change over time, and you can do therapy, which is actually part of having some growth in a very specific area and way.
What would you say to someone who is exploring their sexual or gender identity, but is also wondering whether they might have sexual orientation OCD (which causes obsessive fears around sexuality), or gender OCD (characterized by doubts and concerns about your “true” gender), and so isn’t sure if they can “trust” those feelings?
I’d say, ‘Let’s look at what you’re experiencing to see if it fits OCD. If it seems like the thoughts are less ego dystonic and more ego syntonic, meaning in sync with who someone is, and there’s not an obvious compulsion or intrusive thought, that might be more indicative of someone who’s genuinely exploring and is just uncertain. An OCD specialist can help them look at this.
And if it’s OCD, then we can address it using ERP, or exposure and response prevention therapy. In ERP, we do exposure to the things that trigger your OCD and anxiety and then we put that together with the response prevention, which is teaching you to resist those compulsive responses that may give you some short-term relief, but in the long term are really just making the OCD and anxiety stronger.
ERP is used to treat all the subtypes of OCD, using the mechanism that the OCD works with. We’ll take it step-by-step and work at a pace that’s comfortable for you, but also has just enough discomfort that we’re really challenging the OCD in a way that’s successful and will help you grow over time. We’ll really tailor the ERP plan to you specifically, because OCD is very particular to each person it strikes.
What might ERP look like for someone who is also anxious about figuring out facets of their identity like gender and sexuality?
It’s important to work with an OCD specialist who can help suss out the differences between OCD themes and genuine exploration. I’m not going to try to treat genuine exploration with ERP; I’ll do what I can to support that and then maybe suggest that they get a specialist that is more well-versed in helping someone explore a sexual or gender identity. And then for anything that comes up that is OCD, we do ERP. No matter what, it’s important for me that they get the right care.
What does it look like to work with both an OCD specialist doing ERP and another type of therapist who specializes in something else?
Usually if I’m collaborating with other therapists, I like to [offer them] a free “basics of OCD,” just to make sure I’m being clear about the things we’re working on and how ERP works. So I’m like, ‘We’re doing XYZ and we want to be careful not to do ABC because those are compulsions.’ If someone already has a therapist I would try to find out whether the current therapist is an unknowing participant in any compulsions.
So it’s a little bit of psychoeducation, because sadly most therapists don’t learn anything about OCD in grad school. I don’t know why, but it’s a very common trend. Hopefully that’s changing. Therapists who can treat OCD are able to do so because they receive specialized training.
I [also] have a lot of people who might pause their primary therapist to come do ERP, and that can be good because you know it’s just you and the Member managing things, and you can always keep the other therapist updated or do a handoff when they transition back.
What would you say to someone who isn’t sure whether they can pursue ERP because they’re in the process of figuring out how to navigate a neurodivergent identity?
OCD is a very common co-occurring condition for neurodivergence, so it’s important you have a clinician who understands both so they can effectively differentiate.
It’s important for people to feel both like they can be comfortable and that it will be alright with the clinician if they’re still exploring and learning about their neurodivergence, and also working on their OCD. I found out that I was autistic four years ago, and it’s kind of just an ongoing journey. I still learn brand new things about myself on a regular basis. And if I had to have that all figured out before I could do any therapy that would be a bummer, because I have needed therapy in the past and it’s important that I did that.
Oftentimes we have people do assessments about autism and ADHD based on symptoms we’re seeing during treatment that maybe someone else thought were OCD. And if we’re waiting for assessment, we can probably do more psychoeducation, which involves teaching the [Member] about the reasoning and mechanisms behind specific suggestions a therapist might make, which can actually be really helpful for neurodivergent people because we have a tendency not to do things if they do not make sense to us.
What might ERP look like for someone who has also been diagnosed with ADHD or autism, or believes they may have ADHD or be autistic?
ERP might look a little different for our neurodivergent folks, because people have different nervous systems and different brain patterns. I usually tell people who are new to working with neurodivergence and OCD that your habituation and generalization rates are probably going to take longer and that’s okay. It’s just the way we process information. It takes a little more time, a little more repetition, to see some movement in our anxiety levels and scores.
It’s really important that we collaborate on the hierarchy of priorities, especially with neurodivergent folks. Sometimes when we have to really divide up an ERP exercise that we might give to someone who’s neurotypical and not think twice about it, and then not realize that for the autistic person there are more steps within what you’re asking, and so we have to break it up more.
For example, let’s say someone is doing 15 checks of the front door, we might ask a neurotypical person to try to cut that down by 50%, or work on not doing that [at all] this week. For an autistic person, that can be way too big of an ask. We might ask them to try reducing the number of checks for one day a week, and we’ll build up from there.
Sometimes, what happens is that OCD can attack someone’s neurodivergence. I work with someone with very strong ADHD, and when I met him, he was checking his backpack like 10 times before leaving for work to make sure he didn’t forget anything. For a neurotypical member doing that behavior, we might expect he could go without any checks and be okay. For this particular client, I want to respect his neurodivergence. So he gets to have one ADHD backpack check but not more. The check is an important ADHD tool, I just want to take whatever OCD has put on top of that away.
We want everybody to experience success with ERP, especially and including all of our neurodivergent members. Success makes more success feel possible.
Why is it crucial for someone who is neurodivergent and has OCD to see a therapist who specializes in both ERP and neurodivergence?
There is sometimes hyper-responsibility with neurodivergence. Because we’re very justice-oriented, we want to be authentic and moral most of the time, and because it’s much easier for our brains if they can put info in two buckets, like “good” vs. “bad,” or “nice” vs. “mean,” instead of ten different buckets that require different thinking. OCD can kind of hop onto that and turn that into hyper-responsibility.
We want to be accommodating of neurodivergence but we don’t ever want to accommodate OCD, so that’s another important reason for having someone who understands both. If this is someone who’s neurodivergent and has some traits of hyperresponsibility, we want to respect that and find healthy ways to have those outlets that don’t make them feel hyper-responsible for things that aren’t really their concern.
What would you say to someone hesitant to start treatment, because they’re worried it won’t work or they want a “quick fix?”
ERP studies show that it helps about 80% of people who try it, which is an outstanding success rate in mental health treatments. For the most part it is effective, for most people, we will tailor it to make it effective for you as a neurodivergent person and it really is kind of just a series of experiments. Sometimes I don’t know what’s going to work for you, we just have to get together, collaborate, and experiment, and see what happens.
Most of the time people I work with who are neurodivergent see some movement, we may take different ways of getting there, but by and large for the most part they are helped.
For the quick fix, I would say that I would love so much to have a magic wand that I could wave and take this OCD away from you. Unfortunately it just doesn’t work like that yet, maybe ten, twenty years we find a magic pill. But unfortunately there are no quick fixes.
And I think that makes sense when we look at how long your OCD has probably been around which is maybe years, decades. We’re not going to shut that down overnight, our therapy is going to be a work in progress where we take whatever steps, and however many steps, we need to take to get to your goals.
Feeling truly seen and understood matters in your treatment journey. When a therapist understands and respects the full context of your life, including the experiences, identities, and backgrounds that shape it, it can make it easier to feel safe, be open, and stay engaged in the treatment process.
At NOCD, all of our therapists are trained in both evidence-based OCD treatment and culturally competent care—so you can feel safe and supported, every step of the way. To learn more, book a free 15-minute call with our team.
