Alison Dotson's Blog, page 5

Making Relationships Work With OCD: Genevieve Kales

[image error]Happy Monday! Help me welcome Genevieve Kales, who started advocating for OCD awareness a few years ago and has already made a huge impact on our community. You might recognize her from the documentary “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder,” directed by Ethan Smith, in which she shared her experience with OCD.

You played a big role in the documentary “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder.” How did it feel to be so open? What has the response to the documentary been like?

It was scary, to say the least. I remember the feeling of being in the dressing room before getting ready to be filmed. I instantly got tunnel vision, couldn’t feel my legs, and my heart was pounding out of my chest. I felt scared to share my truth. Thoughts were running through my head about what would people think about me. I didn’t think I could do it, being so vulnerable.

I was able to ground myself prior going on with the help of some amazing people who were alongside me.

The response to the documentary was incredible. People reached out to me saying they had no idea how things had really been for me before they saw the documentary. I’m thankful the message of my story came out that way and I’m thankful something with that magnitude displayed my truth. Educating people is our power and how we advocate for those with our illness.

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What inspired you to become an OCD advocate?

My first IOCDF conference, I remember seeing people share and talk about their story. I was only 15 turning 16 at the time. I wanted to help others, just like how people had inspired and helped me along my journey. I remember exactly who inspired me to find my truth and I don’t think I’ve ever told him this, but Ethan Smith’s story saved mine. No one told me when I started my journey that I wasn’t alone. I thought I was the only one with this mental illness until I went to a convention and saw thousands. Over the nine years I’ve been going, I see new faces every time. Seeing more and more new faces pushes me to be an advocate.

You’ve presented at several OCD conferences, and a couple of your panels focused on how to navigate relationships with OCD. How has OCD affected your own relationships? 

I’d be lying if I didn’t say my OCD was the third wheel in most of my past relationships. I’ve struggled with them for years. Some were healthy and others were toxic and unhealthy. Through the years it triggered my OCD to an unhealthy state and that’s actually what put me into a deep-seeded depression. I was coping in unhealthy ways. My OCD is triggered by traumatic events and life-changing situations. My relationships were the root of most of my problems through the years. I truly didn’t see the light nor did I want help at that time. I struggled; my friends and loved one saw a different side of me. I went through major PTSD, trauma, and pain. It’s a huge reason why I speak about relationships now and over the past few years. I used to think I did not deserve better than the way I had been treated because of my OCD. I struggled with relational OCD and contamination OCD, which was a deadly combo for some of the past relationships I had been in over the years. I now share my story regarding relationships to help others.

I’ve learned over the years how to deal and manage my OCD in relationships. I am currently in the most mentally, physically, and emotionally stable relationship I’ve ever been in. Yes, my OCD pops up in my current relationship and yes it’s been troublesome at times. I do tend to get very insecure due to that. Personally, being open and vulnerable has helped my significant other get a little glimpse into my thoughts and feelings. I shared my OCD with him early on because I’ve learned through my trauma and pain that it’s easier to be honest and open then to hide behind your truth. I wanted someone to finally love me for me!

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How long have you had OCD? How did you first realize what you’d been going through might be OCD?

I was diagnosed with OCD at the age of 11 by my family physician. Through the years up to age 11 my family noticed a change in my behavior and tendencies. I feared harming others, I was repeating certain phrases and hoarding certain clothing and accessories, and repeated handwashing. Now, looking back at my life, I see OCD tendencies and traits going back to when I was younger, at the age of 4 or 5.

My OCD manifested over the years into different subtypes. I am currently more of a mental ruminator than physical “compulser” at this point in my life. To be honest that’s been more painful so to speak because my head becomes a dark place more often due to more of my compulsions and thoughts being mostly mentally intrusive.

Once you were diagnosed how did you go about treating it?

Being diagnosed at age of 11, I was mad, angry, and to be honest didn’t want to believe I was different. I didn’t want to believe I wasn’t like the other kids. I didn’t seek help till I was 14 or 15 and didn’t know where to start. I didn’t want to accept therapy back then because I though therapy was only for people who were very sick. I was in denial.

The intrusive thoughts and repetitive actions seemed impossible to stop. I couldn’t believe I was struggling that much. So, I carried on with my middle school life and didn’t let it really bother me, or so I had thought. I started seeing myself changing and being fearful of everything including student lunch time. Sitting next to people in close quarters being scared of everything. I started treatment after I remember going into the bathroom and crying and screaming “Why am I not like other people”. I didn’t want to go back to school. I started treatment and found a therapist that was a good fit for me. It took a few tries to find someone who I connected with. Looking back at it now, my journey was mine for trials and errors.  I wouldn’t change my struggles because it made me into the women and advocate I am today.

How did you tell your family and friends about your diagnosis? Were you nervous? 

My immediate family knew and was by my side through it all. They didn’t quite understand what I was going through but they supported my process and treatment. My mom researched everything and how to help me. I didn’t tell my friends or public till I was in my second year of college. I went through about four years of treatment before I felt comfortable telling people. I was afraid of judgment. The only people who knew about my illness was my parents and sister, for a long time. It’s how I choose to keep it. I wasn’t ready to be judged or bullied due to my illness. I wasn’t prepared to be different. I was incredibly nervous to be vocal about it.

As years went by I knew my voice and story could help those fighting similar battles. I knew that as my story grew in the mental illness avocation community, it would soon be known in the world. I came out about it publicly in 2017.

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We’re all going through such a strange time with COVID-19. Some of us with OCD feel as though OCD prepared us for living with so much uncertainty and even isolation. How have you been coping with the doubt? 

Well, I know one thing for sure is my OCD has prepared me for everything including a pandemic and The Purge. My anxiety has, of course, been difficult to handle. My depression has been slipping in, but many years in therapy has prepared me for times like this. Even if certain days are more challenging, I know “this too shall pass.” I feel as if my OCD likes this isolation. No germs, people, or social gatherings. Sounds great, right? Yet, the fear of health and harm trigger my OCD. I’ve been worried about the health of my loved ones. I try not to let my mental rumination take hold of me as I practice what I’ve learned through therapy to keep me grounded.

If you could share just one piece of advice with others who have OCD, what would it be?

I know what it’s like to cry alone on your apartment floor at 2 a.m. because you just can’t do it anymore. I know what it’s like to feel hopeless and at rock bottom. It does get better. When I started my journey, I wish I had known that I wasn’t alone. I also, felt like I was the only one dealing with it. I wondered “Why am I anxious and depressed?” “Why am I the one that has to experience this?” I didn’t know there were millions of people just like me. I wish someone told me it’s okay to not be okay and that you are never alone in your fight with mental illness.

Advocating for OCD During a Crisis: Ethan Smith

[image error]Ethan Smith is one of the busiest advocates out there! We’re lucky he was able to carve out some time to talk about his latest projects and what he’s doing to offer support in this unpredictable climate. Thank you for everything you do for the OCD community, Ethan!

Ethan, it’s been a while since you shared your story with us! You’ve been busy with several different projects, but let’s start with your role as National Ambassador for the International OCD Foundation (IOCDF). What does a national ambassador do?

Great question! Technically I’m the first, so I can only answer based on my own experience. So far, it’s talking about OCD. A lot! Which is perfect since that’s the impetus behind my advocacy anyway. Honestly, the IOCDF has really granted me the leeway to make the role whatever I’ve wanted it to be. Originally, it was meant to replace the spokesperson role. Be the front-facing media representative for the IOCDF, as well as lead the ambassador and ocdvocate programs. Which I do, but in addition to, I’ve been involved in a variety of discussions and decisions with the IOCDF that directly impact all advocacy programs as well as supporting the community through lived experience advocacy. I’m very grateful the IOCDF includes and involves me as well as values my input as we continue to evolve and grow the role.

Tell us about your live series, “Just, Ethan.”

I have to give credit where credit is due. I’ve really enjoyed Liz McInvale’s “Live With Liz” streams on FB. So I too wanted a way to further connect with the community. So in September of 2019, I pitched the idea of doing a live stream similar to Liz’s. We launched in October during OCD Awareness week. Candidly it’s a purely selfish endeavor. Probably my favorite thing to do as both an OCD sufferer and OCD advocate is connect with the community on a very personal level. Hear their stories, tell them mine, and share ideas, skills, and tools that I’ve found helpful in my own recovery—Just, Ethan gives me that very opportunity. I truly love the live streams and the ability to reach people all over the world. It’s a collaboration and we support each other. It’s quite wonderful.

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With so many people staying home to slow the spread of COVID-19, the IOCDF has been hosting a series of virtual town halls on several OCD-related topics. How can people get involved?

The town halls definitely were birthed out of the COVID-19 crisis. One of the silver linings? The IOCDF always planned to provide continuous virtual programming and were in the process of developing. But necessity is the mother of invention and with COVID-19 quickly developing and impacting the OCD community in such profound ways, both in symptoms and stigma, there was no time to waste. We immediately started discussing ways in which we could support the community during this time, and Town Halls were born. We also found it necessary to support clinicians, as we’re all humans and all being impacted by this. So we also began a series of clinical town halls to support clinicians so they could continue to support their patients in effective and healthy ways. As well as move their practices to all virtual. If people want to get involved in town halls or future IOCDF virtual programming, they can email me anytime at JustEthan@IOCDF.org and we can discuss further. Any and all ideas are welcome. I love collaborating with community.

You just did a great interview with The Hill about OCD and COVID-19—I keep seeing advice to “be OCD” about handwashing and staying inside. What are people getting wrong about OCD?

The mainstream media and the public are quickly making the assumption that it’s the compulsions themselves, such as handwashing and being overly vigilant when it comes to germs, that makes the OCD community more adept at handling this crisis and less at risk for contracting the illness. Of course this stems from the misunderstand that OCD is just contamination and hand washing. Which we work daily to combat that stigma. What we’re trying to explain to the media and public is: 1. OCD is so much more than contamination. That it’s comprised of a variety of subtypes ranging from harm to religious OCD as well as intrusive violent and sexual thoughts. 2. For non-OCD sufferers, COVID-19 is a small glimpse into what it’s like to have untreated OCD, thinking through moves and actions throughout your day, whatever you may or may not have touched, when to wash your hands and sanitize, and experience the anxiety that typically accompanies the the lack of certainty. 3. Finally, we’re working very hard to explain that it’s not the compulsions that make the OCD community perhaps better at managing during this time, but it’s the treatment (ERP, or exposure response prevention) that provides the skills and tools that give OCD sufferers the advantage when coping with the unknown.

A truly beautiful project you’ve put out is the documentary about OCD, “Uncovering OCD: The Truth About Obsessive-Compulsive Disorder.” What was it like gathering these incredible personal stories about OCD? What has the response been like?

Thank you for bringing this up and for the kind words. The documentary was a beautiful culmination of brave individuals telling their OCD stories in honest, raw, and vulnerable ways. It would truly not be as powerful as it is without all the advocates who appear in it. The original purpose was to educate health experts who don’t normally interact with the OCD population. But as we heard the stories and began the post-production process, we knew we had something very special and we had to share it publicly. If for no other reason, to teach the world what real OCD looks like from the individuals who suffer and that have overcome. The response has been incredible, from both the OCD community and beyond. The documentary is being used a variety of ways, both in professional and personal settings. At the end of the day, I’m just glad there is another resource that exists to help facilitate a better understanding of what OCD is and how it impacts sufferers. Whether it’s teaching clinicians about the disorder or a teenager using the documentary to explain to their parents.

This is the first time I’m saying this publicly, but my team and I are in the very infancy stages of making a full length feature documentary on OCD based on the success of this one. You heard it here first!

Not Alone Notes: Morgan Rondinelli and Molly Fishback

[image error]When I was in college few things were more exciting than checking my little PO box and seeing that I’d gotten mail—a care package from my mom or a card from one of my roommates. Sure, living together meant we could just hand each other a note, but that’s not nearly as fun.

Morgan Rondinelli and Molly Fishback understand the power of a handwritten, customized note, and their one thousand (and counting!) recipients have gotten to experience the excitement of checking their mail and finding a message of hope. Morgan and Molly are here to share the inspiration behind the Not Alone Notes initiative, what has changed since starting the project, and what’s next.

When did you start Not Alone Notes? What inspired you to start it?

Morgan: The idea for Not Alone Notes stemmed from watching a YouTube video late at night, as one does when trying to fall asleep. I was watching a family vlogger channel, and their young daughter had just been diagnosed with type 1 diabetes. Shortly after she was diagnosed, they posted a video of her excitedly opening a package that had finally arrived in the mail. In it were children’s books about type 1, resources for the parents, and her favorite, a stuffed animal with special patches she could use to practice finger pricks and giving insulin. I loved this concept and wished to mail something to people with OCD after they are diagnosed. We could include memoir books, workbooks, fiddle toys, stress balls, resources, and an encouraging letter.

I quickly realized that a package of that size would be expensive to manage, but what stuck was the encouraging letter and list of resources. I loved writing in general and was pen pals with several friends I had met through the OCD conference. Plus, I already had a box full of stationery, so it would only cost the price of a stamp.

I posted on my blog about Not Alone Notes in September of 2017. Basically, I outlined my idea to mail handwritten notes to people with OCD and linked to a Google form I made asking for name, address, and favorite color. I had no idea if anyone would actually request a note. About a week later, though, I got the email notifying me that someone had made the first request. Sitting at my desk in my college dorm room, I wrote that first Not Alone Note. And we haven’t stopped since.[image error]

Not Alone Notes has grown in leaps and bounds. Your team has grown, too. How did Molly become involved?

Morgan: Molly became involved within weeks, if not days, of mailing that first note. She followed me on Twitter and sent me a DM explaining that she was an artist and would love to hand make cards for the project. I adored the idea of using more personalized cards than store-bought stationery, so I quickly agreed. Shortly after, this stranger several states away mailed me a package of beautiful, handmade cards.

As requests continued to come in at a faster speed, I realized I needed help writing. Molly had stayed in contact and offered to help, so she was the perfect fit. Over time, we’ve become partners in this project, and also close friends. I’m continually blown away by Molly’s ideas for Not Alone Notes, as well as her skills for marketing and expanding the project.

Recently, we surpassed mailing our thousandth note. For me, this was overwhelming emotionally. Two and a half years ago, I thought it would be a big deal if we sent one hundred notes. Then, we met that, and then two hundred, and so on. And here we are. If you count how many days it’s been since we mailed the first note, we actually average sending over at least one note a day. I keep having to remind myself that Molly, our team of writers, and I, we did that. I’m so proud of our little team and that this idea became a reality.

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You’ve had so many requests for handmade notes that you hit a backlog—but now you’re all caught up! How did you accomplish that?

Molly: We were invited to speak at Chrissie Hodge’s event OCD Gamechangers 2020. The day before the event, Chrissie put together Mastermind groups for the speakers where we can throw around ideas for upcoming projects as well as talk about our current struggles in advocacy. We had recently held applications for people in the OCD community to become Not Alone Note writers and card makers. When at OCD Gamechangers we had accepted two people, but had a total of forty-five people submit applications to help us. During our Mastermind group we were given the advice that if more people want to help, then let them. This meant for us to lose some control. It wasn’t going to be just the two of us writing, making, and sending cards. We were told that we will not be able to grow if we don’t give up some control.

Once we went home, we discussed how many people we wanted to add to our writing team. We decided to add ten new letter writers, and they are now part of our letter writer family. We would not be able to catch up without them. They have busted out amazing handmade cards and we are proud of how much they have accomplished so far! We are lucky to have them on our team!

At the time of the Mastermind session we were four months behind in writing notes. Now, we are caught up and work on requests soon after we receive them.

Morgan, Not Alone Notes is now a nonprofit. Congratulations! Why was it important to you to do that?

Morgan: Becoming a nonprofit was something we had considered for Not Alone Notes pretty early on in our growth. It felt important to provide credibility when requesting people’s addresses, opportunities for grants and tax-deductible donations, the ability to open a bank account, protection from liability, and potentially reduced postage. After doing much research and having a bit of luck, I connected with a friend who ran the nonprofit side of things for the community theater I participate with. He was willing to help Not Alone Notes with the incorporation and filing process free of charge. This saved us hundreds of dollars compared to if we had to pay lawyer fees or a professional service. You really can do it all by yourself, it just takes some work. Now, we are at the stage of bylaws and constitution. We are just about done writing them and will soon file. Then, we move on to 501(c)3 paperwork. If anything, I’m learning a great deal about the behind-the-scenes of nonprofit work just from this hands-on experience.

With so many people staying home due to COVID-19, have you seen an increase in requests for notes? Do you have a message of hope to share in this unprecedented time?

Molly: We have used this time to reach out to organizations and prominent members of the OCD community to share Not Alone Notes with their following. This is a tough time for everyone, and we can imagine even more so for those who struggle with a mental illness. Since the USPS is still running, we are able to continue to write notes and get them out to people with OCD and related disorders, and remind them that they aren’t alone during this hard time.

My message of hope is that although times are tough, the OCD community is still here for you. We are all in this together trying to figure out how to best live our lives during this unpredictable time. Remember to keep in touch with friends and family. Although we cannot be there physically with them, we can use technology (and letter writing) to connect.

Founder of Huddle.care: Maggie Perry

[image error]Therapist Maggie Perry presented at the 2020 OCD Gamechangers, and it’s easy to see why: With her creation of Huddle.care, an innovative online therapy program, she is helping change the way individuals with OCD and anxiety get treatment. Feelings of isolation and shame don’t stand a chance against support from a therapist and peers who get it. Thank you for being here, Maggie!

How long have you treated OCD? What led you to focus on OCD and anxiety?

I’ve been treating anxiety and OCD full-time for seven years. I trained at the Anxiety and Stress Disorders Institute of Maryland for my doctoral internship and post-doctoral fellowship. Since then, I owned an in-person private practice in San Francisco for two years and have been running Huddle for three years. I’ve been excited about anxiety disorders and OCD since my training because (1) they are treatable through cognitive and behavioral methods, (2) sufferers can make quick progress, and (3) some treatment interventions are hilarious. Put another way, I’m highly motivated by helping people get better and I find the process of psychotherapy for anxiety and OCD interesting, fun, and meaningful.

Tell us about Hudd le.care. Why did you create it?

Huddle.care is a group therapy program that meets by video chat. It includes education, community time for progress and accountability, small group therapy, and individual sessions. I created it because I love group therapy. I believe that group therapy is the best way to overcome shame. Group therapy is not popular because it is difficult to schedule. I created a model that overcame some of the challenges of scheduling by putting it online and allowing people to come at any time.

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Most of my readers are familiar with standard treatment for OCD, seeing a therapist one-on-one, in person. What makes Huddle.care different, and why is it so effective?

Huddle.care uses the evidence-based methods you’d expect in individual therapy, plus the support, validation, and normalization of hearing other people going through the same thing. It is effective because the support of other people reduces shame and increases motivation and hope above and beyond what individual therapy offers.

Having an anxiety disorder can already make a person feel isolated—add a pandemic to the mix and it can start to feel unbearable. You’re offering free online support groups during this uncertain time. What would you tell someone who’s curious about joining one?

I’m offering both free peer support groups and a free month of the Huddle program to provide extra support during the pandemic. The peer support groups are great if you would like to meet other people and discuss your experience with loneliness and isolation during the pandemic. Peer support groups differ from group therapy because there is no leader and you won’t learn cognitive behavioral skills to support your mental health. In the Huddle program, the groups are semi-structured and the topics are decided by the group when everyone arrives. The licensed therapist who is leading the group sets an agenda and decides what cognitive and behavioral mechanisms work best for the topics that the group has decided upon in that group. Everyone gets an equal amount of time to contribute to the group.

Several people with OCD have said they’re actually not anxious about COVID-19, and there are different theories about why. I don’t feel extra anxiety about it, and I’ve wondered if it’s because I feel validated—unlike the doubt my obsessions cause, I know this is real. Or maybe I’m prepared for the uncertainty because I’ve had to develop those skills over the years. Have you had clients say they’re not particularly worried about the virus?

Yes, I think all three scenarios are occurring: some people feel validated that fears that have previously seemed irrational now seem rational, some people already have the skills to relate well to the uncertainty, and some people have had an increase of anxiety because of all of the uncertainties related to the pandemic. Like always, it’s best not to judge what you feel afraid of and why, but rather focus on how to relate effectively to the thoughts, feelings, and sensations that scare you. If you suddenly feel less anxiety because this problem is real, I suspect that your OCD in everyday life is typically maintained by shame about your content. If you don’t have anxiety because you already know how to relate to uncertainty, then your treatment is going great! Keep it up.

When it comes to OCD, what is the difference between reassurance and support?

OCD always come back. You can tell the difference between compulsive reassurance-seeking and support because of how it functions. If you need support, you will feel calm, connected, and supported when you receive it. If you are compulsively attempting to get reassurance, you will get brief relief and then have the urge to get reassurance again. The content of the support or reassurance isn’t as important as how the behavior is functioning. Usually the person who is giving the reassurance can tell that the person asking seems unable to be reassured. The reassurance-seeking person will feel a little better, but then worse after seeking reassurance. Both people should reflect on how they feel to decide whether to offer support or to refrain from reassurance. The best question that both people can ask when a question pops up is, “Would I ask this question if I didn’t feel anxious?” If the answer is “Yes, I would still ask” try delaying for at least 30 minutes, but preferably one day, to see if you would still ask. Any problem that actually needs solving is also a problem tomorrow. If you need support, you’ll also need support tomorrow. For today, see if you can manage your own experience.

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If I were to join Huddle.care, how often would I get to see Thompson? Does he have office hours?

Thompson works the same hours I do, although he often sleeps on the job. You will often see him sleeping on the couch behind me. He likes to wag his tail when I laugh and he’s proud of his contributions to your mental health.

If you could share just one piece of advice with someone who has OCD, what would it be?

Avoidance creates, maintains, and intensifies your OCD. Find your avoidances and do the opposite.

Treating OCD Outside the Box: Christopher Schoenstedt

[image error]Today we’re getting insight from Christopher Schoenstedt, MA, an OCD therapist with a practice in downtown St. Paul, Minnesota. (Currently, due to COVID-19, he’s only doing teletherapy.) Thank you, Christopher!

How long have you treated OCD?

I have treated OCD in different capacities for around five years.

What led you to focus on anxiety, OCD, and panic?

One of the first mental health clients I worked with at a county social services department was someone who had suffered with harm OCD for decades.  In my research on harm OCD (I didn’t know much about it), I found an article detailing mental health treatment unlike anything I had heard of before. The writer was a psychologist explaining how he uses exposure and response prevention (ERP) to deal with violent obsessions. He gave the example of a young man who was having intrusive thoughts about killing his father. As one part of his treatment, the client was told to hold a large knife while sitting next to his father on the couch. Every once in a while, his father was instructed to turn to him and say, “Please don’t kill me, son.”

Without having knowledge or experience with this type of treatment, it can sound very counterintuitive and even dangerous. In reality, it is a very effective and empirically validated treatment. The more I learned about ERP, the more I wanted to continue working with the populations best treated by this type of therapy.  I liked the idea of using a very action-oriented approach to help people get better, and oftentimes rather quickly, by facing their fears rather than continuing to run from them.

What can a newly diagnosed person with OCD expect if they come to you for treatment?

First and foremost, I like to establish a relationship with the client that fosters trust in me and the process. I want to give them hope that it is possible for them to feel better, and oftentimes rather quickly. As part of the process, I also have to ask a lot of questions at first so that I can get a complete picture of what the client’s experience is and has been; what prompted them to seek treatment; and what their idea of a better life looks like.

ERP is a first-line treatment for these disorders, so, after the initial questions I really try to educate people on how it works and why it is so effective. I want the client to understand how different it is from the other types of treatment they might have received. A hallmark symptom of these disorders is avoidance. People fail to get better because they go through life avoiding or running away from all the things that frighten them and cause anxiety. ERP works because it involves the client moving toward the sources of their fear and anxiety in order to develop more optimal responses to those feelings. At first glance, this can sound incredibly scary, which is why I make it a point to build trust in the process. I will always try to move at the pace that is right for them.

Finally, we will begin the process of creating a plan to systematically target those symptoms that are having the most negative effect on the client’s life.[image error]

Some therapists practice within the four walls of their office, but you meet your clients in their homes or in the community. Why do you travel to see your clients? How does this benefit them?

A person who hasn’t left their home for years because of a mental health condition is most likely unable to leave their home to go to a therapy appointment. My whole manner of helping people is centered around meeting them where they are at and moving at a speed they can handle. If the first step they are able to make is to meet with me in their home, then I want to give them that opportunity. I don’t want a whole segment of the population who could benefit greatly from mental health treatment to suffer needlessly simply because they were unable to take that first step. Additionally, because I utilize a very action-based approach, being able to work with the client within their environment and in the context of the things they actually fear is essential.

What do you consider the biggest misconception people have about OCD, and how can we combat it?

I think that many disorders, such as OCD, are greatly misunderstood and even used as punchlines or derogatory labels in popular culture. For anyone who has suffered with this disorder, OCD is not a punchline at all. It can be a very debilitating mental illness that has the power to ruin the life of the individual sufferer and even the lives of the people around that person. It can take years away from a person’s life and make living nothing more than a miserable endeavor. I would love for the public to be more knowledgeable and empathetic toward individuals suffering with this disorder so that these people will feel more comfortable coming out of the shadows and receiving treatment. It is very sad when I hear someone tell me their story of being in mental anguish for decades because they never received appropriate treatment.

If you could offer just one piece of advice to someone with OCD, what would it be?

In life in general and when trying to help other people, I always make it a point not to offer false hope. I don’t want to diminish what a person is experiencing, and oftentimes doing so just isn’t helpful. That being said, when it comes to OCD, I can say emphatically that there is great hope for success in treatment. Even if you have been dealing with this illness untreated for years, a better life is possible. It begins by you taking the first step.

Drawing on Strength to Face OCD: Thomas Smalley

[image error]Thomas Smalley was diagnosed with obsessive-compulsive disorder (OCD) in high school, and it wasn’t long before he was spreading awareness of the disorder: He spoke about it at Yale when he was only 16! Thomas found purpose in his pain and has helped combat stigma and educate others about OCD. Learn more about his journey, including some of the bumps along the way.

You won the International OCD Foundation (IOCDF) Hero Award in 2019. How did it feel to go from struggling and feeling alone to being recognized as someone who has helped spread awareness of OCD?

It has been an unbelievable journey from the time I was diagnosed at age 15 to now walking across the stage and being recognized for my advocacy efforts. Truth is, I still didn’t feel like a hero even accepting such an honor. The OCD community means so much to me and without the IOCDF I wouldn’t be here today. I owe everything to the amazing support I’ve had around me. That being said, it was a great feeling to look back and think about how much I’ve overcome to get to this point. I want to be an example to people struggling that keeping the faith and determination to improve can bring you up from rock bottom. That doesn’t necessarily mean you won’t have bad days. I still struggle today. But this journey has shown me how to manage.

When did you first experience symptoms of OCD, and when did you realize what you were going through might be OCD?

I first realized my symptoms when I was a freshman in high school. I was closing my locker door over and over again until it felt “just right.” Everything I did had to be done until it felt “just right.” My compulsions would take up to 12 to 14 hours a day, which is when I realized there was a serious problem because it was taking everything away from me. It took me probably eight months to sit my parents down and tell them that I need real help. With the unfortunate stigma around mental health, I was ashamed and felt that I’d be disappointing my parents. When in reality, they were very understanding.

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Once you were diagnosed, how did you go about treating the disorder?

The combination of exposure and response prevention (ERP) therapy and medication quite honestly saved my life. Although ERP is very intense and forces you to sit with excruciating anxiety, it’s that time accepting the uncertainty and discomfort that has helped me learn to cope with my constant obsessions 24/7. The medication helps ease that anxiety as well. I was fortunate enough to find a therapist who is trained in ERP who I connected with very well and still work with today.

Tell us about your YouTube channel, Struggle Into Strength. What inspired you to create videos about OCD?

My YouTube page started my sophomore year of college. It started kind of quietly with a friend of mine who was interested in film. I had spoken at Yale, a few podcasts, and at several national OCD Conferences at that point. I was trying to keep breaking down that wall of negative stigma around mental health and create the idea of a day-in-the-life documentary about dealing with OCD. I felt I needed to bring my advocacy for mental health to my college campus because it isn’t brought enough attention but is so prevalent among college students. At first I didn’t expect much, but the views kept piling up. My feeling was even if only one person watched it, that was one more person educated about OCD, which makes it all worth it.

You started speaking out about OCD when you were a teenager. What would you tell a young person who wants to start advocating for OCD awareness but isn’t sure where to start?

Start by sharing your story with one person. Start being open about your struggles. I think what draws me to advocacy work is the amazing connections you make with others. We all know how lonely OCD makes us feel and that sense of community you’ll get from sharing your story is something I cherish every day. Looking for different awareness events along with reaching out to other advocates is a great place to start looking for any opportunities. I was fortunate to be asked by my therapist to speak at Yale at age 16 and from there just kept going because I loved giving others hope.

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You’ve been discriminated against and bullied because of your openness about your OCD and mental health struggles and even found yourself in the news at one point. How did you overcome discrimination?

OCD can feel so isolating at times and being discriminated and bullied about it definitely can make it worse. However, I tried my best to take a step back and see those situations as great opportunities for advocacy and education about OCD. I try to remember that not everybody understands mental illness and OCD. And then I tried to turn to the positive people and things in my life. As an advocate I’ve learned that not everybody is going to have something nice to say. Sometimes there will be negative feedback. In those instances, it’s best to try and educate and move on.

If you could share just one piece of advice with someone with OCD, what would it be?

God gives his most challenging battles to his toughest soldiers. I’ve seen rock bottom. I’ve been at the point of not wanting to live. It gets better. It takes hard work and courage, but treatment can help you take back control of the life you want to live. Use your resources, such as the IOCDF and all of the amazing public advocates. People want to help you succeed, so make sure to never feel ashamed or broken. Understand you are a part of a strong, family-like community.

Being Inclusive to All With OCD: Vinay Krishnan

[image error]Vinay Krishnan has been vocal about spreading awareness of obsessive-compulsive disorder (OCD), and in a variety of ways: In 2018 he hosted an open-mic night at the OCD Conference, he’s written articles such as “What I Learned Watching LeBron James During My OCD Treatment,” and he’s on the IOCDF Diversity Advisory Council. Today he’s talking about the shame OCD causes, what it’s like to be a minority with a mental illness, and how to combat the negative effects of isolation, which so many of us are dealing with due to the outbreak of the COVID-19 virus. Please help me welcome Vinay!

How long have you had OCD? When did you first experience symptoms, and how long did it take for you to realize what you were going through might be OCD?

I can remember doing compulsions in my head when I was a little kid, but it wasn’t until I was 13 that symptoms really became debilitating and diagnosable, I’d say. And it’s never stopped since then. I didn’t figure out it was OCD until college because my symptoms are not the ones you typically see in popular depictions of the disorder. It wasn’t about hand-washing or neatness. It was about violence. It was about death. Things that don’t come up at parties. So I didn’t put it all together until years later.

I didn’t actually enter treatment until I was 24. So that’s 11 years without care. That would be unthinkable for a physical illness, right? If you broke your leg, you wouldn’t wait 11 years to see a doctor. If you had multiple sclerosis or lupus, you wouldn’t wait 11 years for treatment. But it’s a common story for people with mental illness. It’s the norm, actually. And it’s worse in minority communities.

I’m one of the lucky ones, though. I had resources for treatment. Many of my friends have known for years that they are ill, but they still can’t do anything about it because it’s so hard to afford mental healthcare in this country. We need new ways to access care. And it shouldn’t just be affordable. It should be free. A system like Medicare For All would fundamentally transform mental healthcare in this country. That’s what we all deserve, and I’m going to keep working toward it.

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You wrote “What I Learned Watching LeBron James During My OCD Treatment” while you were in residential treatment for OCD. What inspired you to write about your experience? 

That essay was a big deal for me because that’s the first time I ever spoke publicly about my illness. Before that, only my family and closest friends knew. But my residential treatment transformed me. I met people there doing the most courageous work in the strangest settings. Residential treatment for OCD is a bizarre, surreal, inspiring experience. Dozens of strangers directly confronting their biggest, most debilitating fears together in some small secluded ghost campus. One person might be resisting handwashing, another might be prompted to think they had just started a fire, another would be holding sharp objects in their hands, others would be reading scripts about sexual assault or pedophilia. And the through line is that everyone is filled with terror, until they’re not. It’s a big group of kind people who are all convinced the world is about to end. Until it doesn’t. And it never did. It was fascinating. I knew I had to tell that story.

I felt an obligation, really. These were the strongest people I’d ever met, but I knew they’d all discharge and go back to what they were doing before. They’d adapt and move on and survive as best they could in this country, but they likely wouldn’t be telling the story of our time together for a public audience. I knew I could, though. I knew I had the words. So it felt like it was my time to start speaking. If you can be the voice for a group of people like that, it’s an honor. It’s a thrill.

I told it through a sports lens because I wanted to reach as many people as possible, to get to the people who don’t already opt-in to mental health stories. I thought that was the best way to normalize those discussions and combat stigma. What better vehicle for that than sports? I didn’t want to just talk about illness. I wanted to use the illness as a springboard to talk about universal struggles. Worry. The fear of failure. Attachment. Loss. Things healthy and unhealthy people all struggle with.

What led you to residential treatment? How would you prepare a friend who was about to do the same?

I went because a weekly therapy session wasn’t enough to manage my illness. My condition was too severe. I was barely functioning, and I was a danger to myself. And again, I had the insurance to go. That’s privilege. Without that, residential treatment is a pipe dream. It’s science fiction. It’s just far too expensive if it’s not covered, and I was lucky enough to have coverage at the time. I’m glad I went. It completely transformed how I approach my mind. My condition is still just as severe, and I’ve been hospitalized again since then, but those nine weeks in treatment definitely gave me more tools to manage all this than I ever had before. It taught me skills that I employ now every day.

If someone I knew was about to go, I would tell them to prepare to do some of the hardest work of your life. Exposure therapy feels like torture at times. You and your treatment team are going to design personal little hells for you, and then you’re going to walk right through them. Every day. For four hours. It’s terrifying at first, but there are structures and supports in place to help you get through it, and you have your fellow patients to lean on. And it works. It’s revelatory when it starts working. I’d tell them the first weeks are the hardest, but by the end you won’t want to leave. I’d tell them you’ll make a family there. I’d tell them you’ll be part of a community of people who understand you, who just get it. And that’s a special thing. You have to do the work, though. Treat it like a job. Treat it like training for a marathon. If you put in the work, it’ll transform you.

Imagine I approach you and say I’d love to write about OCD myself but I’m worried about what people will think. What advice do you have for me? 

That’s a tricky one, for anyone with an illness or a past that’s hard to talk about. We need more voices normalizing these discussions, but we don’t need more martyrs, and I would never ask someone to martyr themselves. Especially if they risk family or community shame or a loss of financial support or even violence. These situations are too complicated and specific for me to just say everyone should tell their story. I’m sure there are people who probably shouldn’t.

But I’d like to work toward creating a world where people do feel comfortable telling those stories. So if you’re in a position to do so without risking the consequences I described above, I would certainly encourage you to do so. The most meaningful writing I’ve ever done has been mental health writing. The most meaningful discussions I’ve ever had have been about disability and illness. About people doing whatever they can to survive in this world. Those connections are unlike any others.

I’ve certainly had lots of difficult conversations over the years about all this. With family members. With friends. With co-workers. People wishing I weren’t talking about it. But that was mostly early on, when I first started. It’s been normalized now in all my family and friend circles. We joke about it. We’re comfortable with it. That took years of work, but it’s transformative. And that’s what we’re trying to do on a bigger scale, on the biggest of scales.

I guess to answer your question directly, if someone asked me, I’d want to hear about their particular circumstances before advising them. But I hope everyone who can safely tell these stories can do so when they feel comfortable.

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You’re a member of the IOCDF Diversity Advisory Council, and last November you wrote about the importance of welcoming minorities to spaces like the OCD Conference. You wrote about the 2017 conference, “Very few people in that crowd looked like me. Almost nobody did.” Why did you decide to join the council? Why does representation matter? In other words, why is it important to be able to look around a room and see others who look like you?

Those are big questions. I’d like to answer them by talking about shame. I consider OCD to be the shame illness. Everyone who lives with it is carrying an enormous level of shame with them. And that’s true for people living with anxiety and depression too. But when you have OCD, you’re forced from a very early age to confront the most essential aspects of your nature. Am I a good person? Can I be trusted? What am I capable of? These questions plague our minds. They consume us. You grow up thinking you’re a monster. And then 11 years later, a doctor tells you that you’re not. They tell you that you’re just sick. But you can’t unflip that switch, right? You still view yourself monstrously. As something defective.

This is all more pronounced in minority communities. We go longer without treatment. We face additional discrimination that “others” us. We’re often depicted in media as violent and untrustworthy. It all compounds the shame of the illness.

I think a crucial part of mental health advocacy is decreasing that shame for people. It’s essential. A big part of that is seeing yourself in the person next to you. It’s feeling comfortable in a crowd. It’s telling stories. Minorities are especially vulnerable to the shame and stigma that makes mental illness so much more difficult to deal with. I joined the Council because I thought I could help change that through my writing. So I wrote that essay. And I hope that helped some readers work through their shame.

How can organizations and individuals be more inclusive without resorting to tokenism? How can they increase diversity in a meaningful way, helping minorities feel truly represented and included, and not just checking off a box?

I think there are really two distinct issues in there. The first is what I talked about in the last answer. The shame and stigma. The interpersonal benefits of being more inclusive. That’s a meaningful goal, and it helps people seek treatment. It’s worth pursuing. But there are also structural goals, right? Racism isn’t people being mean to other people. It’s structures and systems. It’s institutional. It’s violence coming directly from the state. There are entrenched reasons minorities face greater barriers to mental health care in this country. That’s not something we can combat through tokenism.

To be honest, I don’t think the IOCDF is really combating it at all at the moment. If I had my way, we’d be meeting directly with representatives on legislation. We’d be protesting. We’d be engaging in civil disobedience. I think if organizations really want greater access to care for their members, they need to throw down. Or they need to partner and fund people who are throwing down. We need to demand the healthcare we deserve. So that’s not about putting a few extra brown people in a room. It’s about ripping out the ableist roots of America’s healthcare system. That’s a bigger challenge, and we’re not really doing that.

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How have you been managing anxiety and daily life with the near-constant news about COVID-19?

It’s been difficult. I actually spent eight days in a psychiatric treatment center recently for depression and suicidal ideation and discharged just as people were beginning to isolate themselves, so transitioning from one to the other definitely took a toll. Typically they don’t recommend you isolate for months during a global pandemic after you leave hospitals for depression. That’s not—that’s not Best Practices. I definitely feel for everyone trying to manage their depression through COVID isolation. That’s a tall task.

The main thing I’ve been doing to stay stable is calling people. I try to have a video call with someone almost every night, often with big groups of people.  My mind does awful things to itself when it’s left alone, so finding ways to stay social has been key. I especially try to check in on my friends with depression. Community care is so important right now. There’s a great tradition of it in disabled communities, and I see it now becoming really innovative. People with disabilities are at such heightened risk in this new world, and we all need to create care webs and create new ways of interacting to keep each other going. This is a time to be building community.

I also think this whole situation really illuminates a lot about what it means to be disabled in America. For starters, it simulates for healthy people what it’s like to have an anxiety disorder. My anxiety hasn’t actually changed much at all because I’m always seeing this stuff in my head anyway. People with our illness always think the world is about to end, so we’re oddly kind of prepared for this. But I hope this all gives healthier people an appreciation for what living with constant fear is like. It also illuminates how far-reaching but ultimately unnecessary ableism is. All those unreasonable workplace accommodations we’ve been demanding for years are suddenly reasonable now that abled people need them. The world we were asking for was always possible. It was just withheld. So I hope we all focus on taking care of each other for now, but afterwards, we really need to have a reckoning.

If you could share just one piece of advice with others who have OCD, what would it be?

My main piece of advice to everyone with this illness is to remember that you always have a choice. The scariest part of OCD is that it makes you feel like you don’t have free will. You feel like you’re not in control of your actions. Like a malfunctioning robot or a train on the wrong tracks. You feel inhuman, mechanical. But none of those things are true. You do have a choice. It just feels like an impossible choice. If OCD tells you that you have to flip a light switch 30 times or your brother is going to die, of course you’re going to flip that light switch. But you don’t actually have to. There’s always another way. You can choose not to engage in that compulsion. Your anxiety will rise and that voice inside your head will scream at you that your brother is in danger, but you can persist. You can go on. You can do something you value with your time instead. That’s how you get through all this. You walk toward what you fear, not away from it.

My advice to everyone living with this illness is that you’re human. You have free will. You have choice. OCD cannot take that away from you. Depression cannot take that away from you. Being suicidal cannot take that away from you. You’re the one at the controls. You can do what you value. What you truly want to do. Every single time.

Finding a Therapist With NOCD: Stephen Smith

[image error]A huge hurdle people with obsessive-compulsive disorder (OCD) often face is finding a qualified therapist in their area and price range—and the key word here is qualified. Too often a therapist includes OCD on the list of issues they treat but they haven’t been trained in evidence-based treatment, or exposure and response prevention (ERP). Stephen Smith, the founder of the NOCD app, has worked tirelessly to expand the network of therapists who are properly trained in ERP and can take clients from anywhere in their state. What he and the NOCD team have done for individuals with OCD is groundbreaking.

You launched NOCD in mid-2017. Can you tell us what your initial goal was with the NOCD app?

When the NOCD platform officially launched in mid-2017, our goal was to improve the way people with OCD self-manage between therapy sessions. Even if someone is lucky enough to see a licensed therapist with specialty training in OCD and exposure and response prevention (ERP), they often will still spend over 99 percent of their time alone, since their therapist can’t go home with them. NOCD’s initial functionality bridges this gap, as it helps people with OCD accept uncertainty when they’re unexpectedly triggered, do ERP treatment exercises, and get support from peers in the community going through similar experiences.

What has changed since then?

While growing NOCD, we learned most people with OCD can’t access a licensed therapist with specialty training in OCD and ERP due to where they live in their state, their busy schedule, and how much money they make. This is challenging since people with OCD need to see a licensed therapist with specialty training in OCD to get better, given how counterintuitive ERP treatment can be at times. To mitigate the access issues, people with OCD can now connect with a licensed therapist who specializes in OCD and do live, face-to-face video sessions with them, all inside the NOCD platform. NOCD therapists either take insurance or offer a sliding scale to make treatment affordable, and they can be accessed no matter where you live in your state. Then, between sessions, you can message your therapist and use the NOCD platform’s functionality for support.

[image error]How many states now have qualified therapists people can find through NOCD?

People in fourteen states today can access a NOCD therapist: Washington, Oregon, California, Colorado, Texas, Minnesota, Illinois, Michigan, Ohio, Mississippi, Pennsylvania, Georgia, Florida, and Tennessee. This month, we will also be opening in Massachusetts, New Jersey, New York, Maryland, Virginia, North Carolina, and South Carolina.

You trained therapists who didn’t already treat OCD. Why? How were they trained?

Because our clinical team has over forty years of experience treating OCD and training providers in ERP, we decided to develop a system to grow the number of OCD therapists in the nation. This allows us to expand access to more people. Our therapists go through a several-day ERP training course run by our clinical team, and afterward they are supervised by our clinical team for several months. The outcomes support our training’s success, as most people with OCD who get treatment from NOCD therapists experience a 40 percent reduction in OCD severity within eight weeks.

How can someone suffering with OCD find a therapist with NOCD? How else can the app help?

It’s really easy. If you go to our website, you can book a free 15-minute call to learn more about working with a NOCD therapist. Also if you have the NOCD app, you can hit the therapist button and schedule a call there too.

OCD Gamechangers: Chrissie Hodges

[image error]If there’s one thing Chrissie Hodges is an expert in, it’s helping people with obsessive-compulsive disorder (OCD) feel less alone. If you’ve seen her YouTube videos about intrusive thoughts, you know what I mean. She will talk about anything related to OCD to spread awareness.

But she’s not an expert in just one thing! Chrissie connects people with OCD to skilled therapists who treat OCD, and she bridges a gap between therapy and everyday life as a peer support specialist.

In 2018 Chrissie launched OCD Gamechangers, an event that has grown in leaps and bounds already. It’s one more way Chrissie brings people together and drives home the message that people with OCD are not alone and that there is hope for a rich and fulfilling life.

Tell us about OCD Gamechangers. What is it, and what inspired y ou to start it?

I felt inspired to start OCD Gamechangers a few years ago when I was leaving the IOCDF conference in San Francisco. I get so much energy and inspiration from being around the community and the other OCD advocates, and I didn’t want to wait a full year to see everyone together again. There was a niche that needed to be filled in the advocates community with networking, support, and sharing each other’s work and projects. So many people were doing wonderful work, but there is not a platform that elevates their hard work. I thought the opportunity for us to all come together and share a mastermind group together and then put on a community event would be a really cool idea. So, the following March, I invited a group of incredible advocates to Denver, rented us an Airbnb, had a mastermind group, and held a community event. And it was so incredible. The following year, I added therapists doing incredible work in our community. Just after the second year, we formed as a nonprofit and held an event internationally in the UK. Our goal is to create events worldwide, which then create community, which then inspires advocates, which then creates awareness and saves lives! So far, we are right on track!

[image error]When is the next OCD Gamechangers?

Our big annual event takes place in March in Denver, Colorado. This year it is Saturday, March 7, which is very soon!

OCD Gamechangers also hosts “OCD Gamechanger Pop-Up Events.” These are events held by individuals in their community and Gamechangers helps support and market. The Pop-Up Events can be open mics, panels, speakers, or anything the individual believes meets the needs of their community. So far we have events planned for Georgia, San Francisco, and a few other states throughout the year (including Minnesota!). In October, OCD Gamechangers will have international events as well. To be announced soon!

Who should attend?

OCD Gamechangers focuses heavily on how every person impacted by OCD has a relevant and important voice. When we come together as a community, listen to each other, and share our stories, we can really solve some of the most crucial issues plaguing sufferers worldwide. Our events invite individuals with OCD, their support systems, therapists who treat OCD, and therapists who are interested in treating OCD.

Let’s say I’ve never been to an OCD Gamechangers before. What should I expect?

Conferences and big events can be really intimidating, especially if you don’t know anyone and also if you live with anxiety! The feedback we’ve received and our own experience at OCD Gamechangers has been that of a welcoming, safe, and motivating environment. Because our events are on the smaller scale (which we plan to keep that way!), we believe we give the opportunity for people to have a more intimate experience by meeting other members of our community and the presenters. It also gives attendees the opportunity to have their voice heard. All of our voices matter, and when we spend time together listening to one another, we can break down barriers and overcome obstacles that have seemed impossible before.

This year, attendees can expect to observe and participate in different activities during the day that will bring them information and education on many topics not often center stage for OCD. All topics discussed in several of our activities were suggested by attendees. Other activities include a Q&A with Dr. Steven Phillipson, an Ignite-style presentation by the therapist advocates, a TED Talk-style presentation by the advocates, and possibly a Family Feud-style game show hosted by Chris Trondsen to highlight taboo topics and make us laugh! We also have several things in place this year for individuals who may feel intimidated or are experiencing anxiety. We have “no small talk” tables, areas designated for downtime, and posters up on the wall to view and contribute to. It’s gonna be a blast!

You’re a peer support specialist. What does a typical day look like for you?

Yes, I am a certified Peer & Family Support Specialist in the state of Colorado. I do a couple things in regards to peer support. There are two of us in private practice through my company Treatment for OCD Consulting. The peer support role in my company is to meet with individuals worldwide struggling with OCD and meet them where they are at to provide support, normalization for the symptoms and the emotional turmoil the illness causes. Any given day, I could be meeting with people from Australia to Alaska to provide support!

I am also the co-founder of the company Peer Recovery Services. Our company has the Colorado Government contract that employees and supervises peer support specialists in the state civilian and forensic mental institutions. So, between working with clients as a peer support and supervising peer supports in our state hospitals, I keep extremely busy!

What advice would you give someone who wants to become a peer support specialist?

My suggestion for individuals looking to get into peer support would be to do some research in their state on how to get trained and if there is a credentialing process. Even if a state doesn’t have a certification process, that doesn’t mean there aren’t peer support jobs available. I would highly suggest that people work in the system and learn as much as possible about how the system works and all of the things individuals face who live with mental illness, substance use, and trauma. Peer support is such an amazing supplemental support for individuals who struggle with mental health symptoms. Peer support is very challenging work, though, and I would highly suggest being in a stable place in recovery and also making sure you have the right support and supervision as you grow in the profession.

OCD Gamechangers With Chrissie Hodges

[image error]If there’s one thing Chrissie Hodges is an expert in, it’s helping people with obsessive-compulsive disorder (OCD) feel less alone. If you’ve seen her YouTube videos about intrusive thoughts, you know what I mean. She will talk about anything related to OCD to spread awareness.

But she’s not an expert in just one thing! Chrissie connects people with OCD to skilled therapists who treat OCD, and she bridges a gap between therapy and everyday life as a peer support specialist.

In 2018 Chrissie launched OCD Gamechangers, an event that has grown in leaps and bounds already. It’s one more way Chrissie brings people together and drives home the message that people with OCD are not alone and that there is hope for a rich and fulfilling life.

Tell us about OCD Gamechangers. What is it, and what inspired y ou to start it?

I felt inspired to start OCD Gamechangers a few years ago when I was leaving the IOCDF conference in San Francisco. I get so much energy and inspiration from being around the community and the other OCD advocates, and I didn’t want to wait a full year to see everyone together again. There was a niche that needed to be filled in the advocates community with networking, support, and sharing each other’s work and projects. So many people were doing wonderful work, but there is not a platform that elevates their hard work. I thought the opportunity for us to all come together and share a mastermind group together and then put on a community event would be a really cool idea. So, the following March, I invited a group of incredible advocates to Denver, rented us an Airbnb, had a mastermind group, and held a community event. And it was so incredible. The following year, I added therapists doing incredible work in our community. Just after the second year, we formed as a nonprofit and held an event internationally in the UK. Our goal is to create events worldwide, which then create community, which then inspires advocates, which then creates awareness and saves lives! So far, we are right on track!

[image error]When is the next OCD Gamechangers?

Our big annual event takes place in March in Denver, Colorado. This year it is Saturday, March 7, which is very soon!

OCD Gamechangers also hosts “OCD Gamechanger Pop-Up Events.” These are events held by individuals in their community and Gamechangers helps support and market. The Pop-Up Events can be open mics, panels, speakers, or anything the individual believes meets the needs of their community. So far we have events planned for Georgia, San Francisco, and a few other states throughout the year (including Minnesota!). In October, OCD Gamechangers will have international events as well. To be announced soon!

Who should attend?

OCD Gamechangers focuses heavily on how every person impacted by OCD has a relevant and important voice. When we come together as a community, listen to each other, and share our stories, we can really solve some of the most crucial issues plaguing sufferers worldwide. Our events invite individuals with OCD, their support systems, therapists who treat OCD, and therapists who are interested in treating OCD.

Let’s say I’ve never been to an OCD Gamechangers before. What should I expect?

Conferences and big events can be really intimidating, especially if you don’t know anyone and also if you live with anxiety! The feedback we’ve received and our own experience at OCD Gamechangers has been that of a welcoming, safe, and motivating environment. Because our events are on the smaller scale (which we plan to keep that way!), we believe we give the opportunity for people to have a more intimate experience by meeting other members of our community and the presenters. It also gives attendees the opportunity to have their voice heard. All of our voices matter, and when we spend time together listening to one another, we can break down barriers and overcome obstacles that have seemed impossible before.

This year, attendees can expect to observe and participate in different activities during the day that will bring them information and education on many topics not often center stage for OCD. All topics discussed in several of our activities were suggested by attendees. Other activities include a Q&A with Dr. Steven Phillipson, an Ignite-style presentation by the therapist advocates, a TED Talk-style presentation by the advocates, and possibly a Family Feud-style game show hosted by Chris Trondsen to highlight taboo topics and make us laugh! We also have several things in place this year for individuals who may feel intimidated or are experiencing anxiety. We have “no small talk” tables, areas designated for downtime, and posters up on the wall to view and contribute to. It’s gonna be a blast!

You’re a peer support specialist. What does a typical day look like for you?

Yes, I am a certified Peer & Family Support Specialist in the state of Colorado. I do a couple things in regards to peer support. There are two of us in private practice through my company Treatment for OCD Consulting. The peer support role in my company is to meet with individuals worldwide struggling with OCD and meet them where they are at to provide support, normalization for the symptoms and the emotional turmoil the illness causes. Any given day, I could be meeting with people from Australia to Alaska to provide support!

I am also the co-founder of the company Peer Recovery Services. Our company has the Colorado Government contract that employees and supervises peer support specialists in the state civilian and forensic mental institutions. So, between working with clients as a peer support and supervising peer supports in our state hospitals, I keep extremely busy!

What advice would you give someone who wants to become a peer support specialist?

My suggestion for individuals looking to get into peer support would be to do some research in their state on how to get trained and if there is a credentialing process. Even if a state doesn’t have a certification process, that doesn’t mean there aren’t peer support jobs available. I would highly suggest that people work in the system and learn as much as possible about how the system works and all of the things individuals face who live with mental illness, substance use, and trauma. Peer support is such an amazing supplemental support for individuals who struggle with mental health symptoms. Peer support is very challenging work, though, and I would highly suggest being in a stable place in recovery and also making sure you have the right support and supervision as you grow in the profession.