Perhaps you attended an OCD (Obsessive compulsive disorder) Awareness Walk, a panel discussion, or a conference; someone you know has OCD; or you want to step into OCD Advocacy yourself! Here are the most frequently asked questions after events, and my best attempts at answering them.

First, a bit about myself and why I might be able to speak to these questions. I’ve come a long way from dropping out of college and being hospitalized for my mental health to being an International OCD Foundation Advocate. I’ve been in therapy for over 15 years, and OCD-specific therapy since 2018. I’ve been an IOCDF “Grassroots Advocate” since 2021 and am now beginning my second term as one of the IOCDF Advocates. I am now honored to lead the International Networking and Advocacy Group and helped found OCD Awareness Walks in Berlin, London, Dublin, and Vienna (and hopefully more to come!).

It is important to note that I am not a therapist, nor would I say that I am fully an expert on OCD. I can speak from my experience managing OCD for over 25 years across many situations: not in therapy, in unhelpful treatment, in helpful treatment, and at different levels of advocacy, across several US states and three countries.

As I’ve started to present more and more about OCD across the US and Europe, I’ve seen consistent questions and statements afterward and in advocacy communities. I’ve done my best to answer these FAQs, but do know that opinion varies!

Treatment

I don’t want to do meds. I tried therapy, and it didn’t work for me.

I totally understand not wanting to take meds. Sometimes the side effects are rough, they can be expensive, and it can be a hassle remembering to take them.

Here are some possible solutions/rebuttals to the reasons I’ve heard:

They’re too expensive.

They certainly can be. Check if there’s a generic available. If not, tell your prescribing doctor that money is an issue, and see if there is a similar medication with a generic version.

You can also ask family and friends to help pay as part of a birthday or holiday gift, or just in general. People in your circle care about your well-being!

I don’t want to take them forever.

You may not have to! But you also might. Some people need glasses or a prosthetic forever. Glasses help bring vision back to a usable level, and medication helps bring brain activity back to a usable level.

We also eat, drink, use the bathroom, shower, and brush our teeth (hopefully!) on a regular basis. It is possible to integrate medication into a daily, lifelong habit.

Meds are only for crazy people. I’m not that bad.

Firstly, take a moment to think how that sounds to those of us who are on medication. This sounds like something you’ve been told in your life and are repeating.

Secondly, you don’t have to be in crisis to receive help. They say, “Dig the well before it’s dry.” Also, going back to the vision analogy, my vision is “not that bad,” but I still benefit from using glasses. It is not a moral failing to need glasses, or a prosthetic, or medication.

I hate the side effects. They are worse than my previous problems!

That sucks! Definitely (with a psychiatrist) get off them or change them. Every person is different and reacts differently to each type of medication. I tried Prozac, which was supposed to give people extra energy as a side effect, and instead, I slept 14 hours a day.

Some bodies need higher doses1, some lower, and some meds have no effect for certain genetic conditions. People with OCD also often have comorbid disorders (more than one), like ADHD, PTSD, depression, anxiety, etc. Meds might help one aspect but not the other, and the side effects aren’t worth the effect they give.

But there are SSRIs, SNRIs, NDRIs, TCAs, MAOIs, stimulants, antipsychotics, etc2. And within each category, there are plenty of options!

There might be a medication out there that has a great effect and mild side effects.

Ok—but do I need meds?

You may not! Many people respond to therapy alone! Talk to your therapist and psychiatrist consistently to see if you do.

Where can I get treatment?

There are many places to get treatment, both in person and online, depending on where you live. It is important to check that the clinic fully understands OCD and how to treat it3. Check that they offer ERP and/or are an OCD-specific clinic.

You can look to see if there is a “Global Partner” or “State Affiliate” where you live that might have specific practitioner recommendations4.

Many practices offer online therapy, and NOCD5 is specific for online OCD treatment.

How do I get affordable treatment?

See if your work or school offers free therapy. You can also check with your insurance provider to see if it is covered. If you don't have insurance, sometimes NOCD and other online providers offer discount codes.

In a more drastic step, some countries offer treatment for free, and this move could save you money.

It can also be cheaper in the long run to invest heavily in treatment at the beginning. An intensive outpatient program (IOP), then doing “homework” and occasional follow-ups, can be cheaper than going every week or two with slower progress.

Can it be cured?

I don’t know. People I trust say yes, and people I trust say no.

I do know that people, with treatment, can achieve a “subclinical level of OCD.” A big part of the disorder is the disorder part—how it affects life detrimentally. Many people I speak to in the OCD advocate community (myself included) have phases when the obsessions and the compulsions do not interfere majorly (or even moderately) with our day-to-day lives, but the tendency can still be there. And then there are spikes, relapses, or just phases with higher OC tendencies.

Also, as the majority of people with OCD have at least one comorbid disorder6, it is possible that OCD is largely better, but the person would not say they are “well”—as ”they might still be managing depression, PTSD, ADHD, etc.

Also, OCD can be sneaky. There are times when I thought I had stopped doing any compulsions, but I realized I was still compulsively avoiding things or replacing them with mental compulsions.

Advocacy questions

Advocacy 101

If you would like to get into advocacy but you’re not sure what you can do, the International Networking and Advocacy Group came up with some ideas to choose from! Each person has their own strengths and opportunities, so find what works well for you.

Media & outreach

You can write blog articles and reach out to magazines, news stations/papers, or websites. You can also reach out to government officials and work on a policy change.

Perhaps you are in a club or on a team outside of the mental health sphere—this can be a great opportunity to connect with people who might not have heard much about OCD before. You can share OCD stats and research, as well as personal experiences.

Trainings & events

You can host a “One Million Steps for OCD” walk7, panel discussion, speaker, or dinner. If you have the capacity, you can host a training or conference.

If you are unable to host, then promoting existing events is helpful as well! You can also attend, connect, and network for future advocacy.

Updating resources

Depending on your role and ability, there are opportunities to update information about OCD. You could update clinical guidelines, flyers for schools, websites, and social media.

It is also important to have accurate translations of resources. If you are multilingual, you can help translate or interpret.

Competitive advocacy and feeling “left out”

Ideally, every space would be inclusive and welcoming, but even the advocacy space is made up of humans who are imperfect. Though the majority of advocates I speak with share the same goals, there are at times scarce opportunities that inherently create competition. In an obvious “competitive” example, there is a limited number of awards given each year.

There are also a limited number of IOCDF advocates, global partners, affiliates, board members, etc., and thankfully, we now have thousands of advocates!

While there are many blogs and podcasts out there, there are still more advocates than there are popular podcast guest opportunities and promoted blogs.

Mathematically, there will continue to be a limit on matching advocates to opportunities.

Then, also, money can get involved. Not every person trying to sell you something is a grifter (though some are!). Therapists and clinicians still need to make an income to live. All advocates with lived experience of OCD have also probably had difficulties at work and spent a large amount of money on treatment. Many people in the mental health space could really use the extra money from books, courses, podcasts, films, etc., while still trying fully to share best-known practices with compassion and kindness. Bills just have to be paid!

It can feel competitive if the community has limited dollars to spend on a new book and limited hours to listen to a new podcast.

There are also nonprofits that are working incredibly hard to provide care and resources, and donating to one gives an opportunity cost of not donating to the other.

But again, almost everyone I speak with wants to work together! I see a huge amount of cross-promotion and collaboration amongst advocate friends and colleagues.

Which perhaps leads to the consequences of human behavior. Building community is such a great thing! Part of a rich community is inside jokes, shared experiences, and communal stories. This is very bonding, but can leave people out who are not “in on it.”

This is one area that can be improved by being cognizant of it and making efforts to “catch people up” and invite new people to join in additional activities.

Also, we’re all human. Sometimes personalities clash. OCD affects 2-3% of the population across the board. That means across political parties, religions, languages, careers, skills, and interests. Some people just won’t get along.

Reducing stigma

I hate when people say, “We’re all a little OCD.”

Personally, I largely agree. OCD can be incredibly debilitating. With my symptoms, I dropped out of school, lost relationships, had to quit working, and I’ve been hospitalized three times with suicidal ideation. OCD is rough.

I think perhaps what people mean by “we’re all a little OCD” is that seemingly everyone has quirks and unique preferences. Though perhaps instead of calling people out on the topic, we can “call them in” and explain that by saying that everyone has OCD, it trivializes the disorder as if it doesn’t really exist.

I hate it when people say, “I’m sooo OCD.”

Here, I only partially agree. When it’s someone on a large platform and they clearly mean that they like being clean and orderly, then I agree that it hinders the message, similarly to “we’re all a little OCD.”

But, it is possible that the person saying it does have OCD and is not fully aware. Playfully saying “I’m sooo OCD” can really be an attempt to downplay and hide really difficult OCD symptoms.

I’ve started saying, “You know, you might! Want to talk to me more about it?”

I’m not ready to be open about it.

Without risking reassurance, it’s ok who you choose to disclose to and when. If it’s a safe, supportive environment, it might be OCD being loud about not sharing, and it could be compulsive avoidance.

However, there are many places and people where it is not safe to disclose a mental illness. That is difficult and incredibly unfortunate, and you can take time and space to share when it’s ok.

When you are ready, being open and honest, and even neutral about having OCD, can help reduce stigma. Perhaps some day it can be discussed in the same way that we discuss being left-handed.

References

1 International OCD Foundation. (n.d.). Medications for OCD.
2 NHS. (2023, September 8). Antidepressants.
3 International OCD Foundation. (n.d.). How to find the right therapist.
4 International OCD Foundation. (n.d.). Affiliates and partners.
5 NOCD. (n.d.). Treat OCD.
6 Shephard, E., & Kardos, M. (2021). Advances in understanding and treating obsessive-compulsive disorder: A review. Psychiatry International, 2(4), 464–478.
7 International OCD Foundation. (n.d.). OCD walk program.