HOCD: A Letter to Loved Ones

Here are a couple hard truths:
1) I hear from more OCD sufferers dealing with HOCD than with any other theme.
2) Many of these sufferers are quite young, still in school, unsure how to seek out help, and scared to share their hard-to-explain concerns with parents or other trusted people in their lives.

I want so much to do something meaningful to help them find their footing.

So, I’m writing here a letter that they can show their parents/trusted advisors. I’m hoping to be a voice if they can’t find their own.

Friends, feel free to share this as needed.

hocd letter

Dear friend of a reader of my blog, hello.

You’ve likely been sent to this blog post by someone who wasn’t able to articulate what he or she is going through– suffering from– or someone who was too scared to trust their own voice and explanation. I hope I can help explain a few things.

The person who sent you this has a strong suspicion that he or she is suffering from what is called HOCD or “homosexual OCD.” Two things to know up front: one, this type of OCD affects both gay and straight people, and two, it does NOT mean that the person who sent you here is gay (if they identify as a straight person) or straight (if they identify as gay).

Confused yet? 🙂 Let me explain.

Obsessive-compulsive disorder can take a lot of forms. What most people think about when they hear OCD is someone who is overly worried about germs or order. While those concerns can be true of an OCD sufferer, the stereotype really misses the point, which is that an OCD sufferer has obsessions– the “O”– unwanted thoughts or images that plague them and cause intense anxiety. They try to relieve the anxiety with compulsions– the “C”– which can take almost any form … really, anything that alleviates the panic they feel. For people who have obsessions about germs, illness, or death, the compulsions often include washing their hands, visiting a doctor, or asking for reassurance (“Do you think I’ll get sick? Do you think I’ll die? Do you think I’m okay?”). For those who have religious obsessions, the compulsions often include repetitive prayer, confession, and (again) seeking reassurance (“Do you think that was sinful? Do you think I’ll go to heaven?”).

One common “theme” of OCD is to question one’s sexuality. We call this theme HOCD. It often comes out of nowhere. Someone who is perfectly comfortable with their sexuality, someone who has never, ever questioned it before, can suddenly be triggered– and now, it’s the only thing they can think about. It becomes their obsession, and to alleviate the anxiety, their compulsions are often things like continually checking their bodily responses to men and women, comparing them, seeking reassurance (sometimes from others, sometimes just from themselves). Often, they will end up spending a great deal of time on the internet, trying to find out why they suddenly are worried they are gay (or straight). I’ve talked to many HOCD sufferers who fit every profile of a straight person– except that they cannot shake the obsession of “what if I’m gay?” Some of these sufferers (both gay and straight, remember) feel absolutely tortured– and no wonder! Our sexual identities are so close to our core. I might hear from a young girl who wants nothing more than to fall in love with a man and get married, but all she can think about is “what if I’m actually gay? what if I get married and years from now, have to leave my husband because it turns out I’m a lesbian?” She will start looking at other young woman, wondering, “Do I find her attractive?” She may start losing her usual attraction to men. She might want to stop hanging out with her girl friends for fear of “turning gay.” (Again, note that HOCD can happen for both men and women, those who identify as straight and gay.) The inability to be 100% certain about their sexuality causes them tremendous distress.

(Even that– “tremendous distress”– is not saying enough. HOCD is sheer torture. And for those who are young and not sure where to turn or who are scared that vocalizing their worries will label them as something they are not– or that they deeply fear being– it is hell.)

A conversation with someone struggling with HOCD can be very confusing.

“So, you like men and want to date and marry a man, but you think you like women?”
“No. I mean, yes. I mean, I’m not gay. I mean, I *think* I’m not gay. I don’t want to be gay.”

“So, wait, you’ve identified as a homosexual man and told us all that you are attracted to men, but now you think you might be straight?”
“No. I don’t know. I don’t want to be straight. But I’m scared I might be. I just need to know for sure.”

That– “I just need to know for sure”– is the battle cry of every person with OCD (whether it manifests itself as HOCD or not).

What you need to know is that, no matter what this looks like, HOCD is not really a battle over sexuality– it is really a brain disorder in which the sufferer’s mind demands a certainty that is quite simply not available in real life. A “normal” mind lets thoughts come and go as they please, but someone with OCD has a mind that traps thoughts so that they only go around and around in circles.

That is why, in the proper treatment of OCD (HOCD or otherwise), we don’t treat the symptoms– the obsessions or compulsions. We treat the OCD and the desperate need for certainty.

Treating the symptoms is like reacting to a fire while the arsonist sets another one somewhere else.
Treating the OCD is like going after the arsonist itself.

How is that done? Through ERP (exposure and response prevention) therapy or through ERP plus medication.

ERP is a therapy in which the brain is re-wired to be able to better deal with uncertainty. It uses exposures that trigger the patient’s anxiety but requests that the patient not respond with compulsions. Instead of getting out of the cold water, the patient is taught to stay in the cold water and get used to it. After a time, as most of us know, it no longer feels cold.

ERP therapy can be done with a professional therapist (there is a great database on the International OCD Foundation’s site) or, with dedication, it can be done from home on one’s own, or with the help of family and friends. I have a list of books that will explain how to do that here.

The most important thing for you to know is that this is not really a battle over this child’s sexuality. It is really a larger, overarching brain disorder and inability to handle uncertainty. OCD will typically move on to harder and scarier themes until it is treated, so I recommend that you help the person who directed you here to get professional help sooner than later. Although this might seem like the time for the family (or even a talk therapist) to “talk it out,” that is the equivalent of putting out fires while the arsonist is still at large. ERP therapy takes out the arsonist.

There are lots of additional resources to help you understand OCD, ERP, and your options at jackieleasommers.com/OCD.

Thank you for being a trusted person for my blog reader.

Best,
Jackie Lea Sommers

P.S. I suffered from various themes of OCD for twenty years. Just twelve weeks of ERP therapy brought my life back under my control. It really works.

P.P.S. As always, a reminder: I’m not a therapist or medical professional– I just have OCD and know a lot about it.

A Third Interview with a Former HOCD Sufferer

First, a note from Jackie: I hear from more OCD sufferers about HOCD than about any other kind of OCD, and nearly every story– when boiled down to its bones– looks the same. In the past, I’ve interviewed “Hannah” (she’s asked me not to use her real name on my blog, though she’s very forthcoming about everything else!) about her experience of having HOCD and being set free from it through ERP (exposure and response prevention) therapy.

Hannah’s first interview
Hannah’s second interview

And now … a few more questions for Hannah.

Outdoor portrait of pretty young girl riding bike in a forest.

Hannah, do you see any common themes amongst HOCD sufferers?
Hannah: YES!! I really, really do. One, a lot of HOCD sufferers seem to have a trigger at some point in their young adult or early adult years, and then they go back to their childhood and start collecting “clues.” In other words, something that happened at the time that they haven’t thought about since (she kissed a girl friend on the cheek, for example), but then when they think about it now, it plagues them (“Oh my goodness, that kiss on the cheek was the first indication that I was gay!”). This is obviously unhelpful and unproductive. Two, a lot of HOCD sufferers tend to lose their attraction to the gender they are normally attracted to. This is scary for them, of course, and seems to enforce what HOCD is telling them.

Did this happen to you?
Hannah: No, but it seems to happen for most HOCD sufferers

Do you know anyone who is homosexual who has HOCD?
Hannah: I do. He is a gay man who loves men, but he has HOCD and gets terrified that he is straight. Even though HOCD stands for “homosexual OCD,” it actually doesn’t only attack straight people. OCD can affect anyone.

I agree with you there. I am online friends with an atheist who has scrupulosity, and most people would think that is an incongruous combination. So, Hannah, I’ve been hearing from some HOCD sufferers who are quite young (under 18), living with parents, and unsure how to approach treatment. What do you suggest?
Hannah: I can completely understand not wanting to tell your parents about your struggles– in fact, when I was going through HOCD, I never told my parents. I didn’t tell anyone until many years later. So I get that. But hopefully those young people can tell their parents that they are struggling with OCD, leave out the HOCD details, and still get help. I think it’s best to meet with a therapist who specializes in ERP therapy, but– as you say on your blog– you can do ERP therapy on your own if you’re very driven. [Jackie interjects: see this post for more info!] The important thing is that, one way or another, you do the exposures of ERP therapy.

Recently, I saw an interview with Elizabeth McIngvale, spokesperson for the International OCD Foundation, in which she said, “With the appropriate treatment (ERP or ERP and medication) you can gain control of your OCD and learn to manage your illness.” I loved that, no matter what, she was insisting on ERP therapy. I know you did ERP therapy. Did you/do you take medication too?
Hannah: I do. Every day. But just like you’ve said before, Jackie, I would choose ERP over meds, if I could only pick one.

Blog readers are looking for hope. Can you give them some hope?
Hannah: A lot of hope! I’m an adult woman who once struggled with HOCD, but today I am 100% sure of my sexual identity. I can even be turned on by women and still know– without a doubt– that I am straight. This is achievable. But it takes the hard work of exposure therapy. But even though ERP is hard, it’s worth it.

What is your best advice?
Hannah: Research, not reassurance. In other words, learn as much as you can about OCD, HOCD, and ERP therapy, but don’t resort to the compulsion of asking anyone (including the world wide web) for reassurances. Study HOCD like a medical subject, not from an angle of “Somebody tell me what I want to hear.” Reassurance feels good for about ten minutes; then you go off in search for more reassurance. It’s a compulsion, and it’s unproductive and ultimately unhelpful. Instead, learn about HOCD and how to treat it (ERP), then DO IT. You can research broken bones– or you get get it set, get a cast, have it heal. Push yourself to get the help you need. There is no other solution besides ERP therapy, so what are you waiting for?

Thanks, Hannah! As always, it’s a pleasure to have you on my blog!

Friends, if you have questions for Hannah, please post them below. And please read my letter to OCD sufferers at http://www.jackieleasommers.com/OCD-help.