How This Activist Is Bringing Awareness to a Less-Known Type of OCD

I lived for 12 years with symptoms of obsessive compulsive disorder (OCD), the type of OCD referred to as “pure OCD” without anyone (including myself) knowing I had a diagnosable and treatable disorder.

With OCD Awareness Week and World Mental Health Day upon us, I was lucky enough to catch mental health advocate and mentor Chrissie Hodges for a quick chat before she headed off to tour around America. I felt very privileged to be able to to write up this piece.

Chrissie does so much for the mental health community and her honest approach to OCD and intrusive thoughts is refreshing to see. So often this condition is seen as a personality quirk and not a “real” illness, so it is great to find someone who has so much passion about bringing awareness and diminishing the stigma that is often attached to OCD.

What have you got planned for OCD Awareness Week?

“I have so much planned for OCD Awareness Week that I can barely keep up! It’s so exciting! First, I’m heading to Dallas, TX for an OCD Awareness Conference and Treatment Success at Richland College on Saturday 7th. It is a one day event and I’ll be a guest speaker and I’m selling and doing a book signing of my memoir ‘Pure OCD: The Invisible Side of Obsessive-Compulsive Disorder.’ Monday the 9th I’ll be broadcasting live on Mental Health on The Mighty to promote OCD Awareness Week and to talk about my lived experience. Once I wrap that up, I’ll be joining a few other advocates remotely on Skype for a big presentation called ‘Mind On Fire’ at California State University Bakersfield to share our lived experiences and educate students and teachers on what OCD is and what it isn’t. I’ll also be doing an AMA hosted by one day that week, but we haven’t quite narrowed the time down yet! And finally, I’m traveling to Minneapolis, Minnesota to present on lived experience and hope for OCD at the Twin Cities IOCDF Affiliate hosted by my fellow OCD advocate Alison Dotson on Thursday the 12th. Phew! I hope I make it through it all!”

How long did it take for you to get diagnosed with OCD?

“I lived for 12 years with symptoms of OCD, the type of OCD referred to as “pure OCD” without anyone (including myself) knowing I had a diagnosable and treatable disorder. I had obsessions that were the fear of vomiting, intrusive sexual thoughts and scrupulosity. Once I was hospitalized inpatient and evaluated, it took less than a week to diagnose me with OCD. However, I think even the therapist was confused about my symptoms and had never seen OCD manifest in that way before!”

Were you aware that you were suffering from OCD before your diagnoses?

“Nope. And I never even suspected for a moment that I had a mental illness, even when I was suffering with debilitating depression and suicidal thoughts daily. I thought people who had mental illness were the stereotypical stigma type, such as ‘lazy/nuts/psycho’ and lived in mental institutions. Even if someone had suggested it to me, I was so stuck in the mindset of stigma, I don’t even know if I would have believed it.”

Do you think there is still a lot of stigma attached to mental illness and if so, how do you think it could be changed?

“Ha! Yes! See my answer above! Like I said, I understand stigma because I had stigma against mental illness. The biggest eye opener for me was being hospitalized in a locked, inpatient facility and getting to meet people who had all sorts of diagnoses. It opened my eyes and my worldview to see that mental illness doesn’t discriminate, so why should we discriminate against it! I think the most powerful way to change stigma is stories of lived experience. And not just the rainbows and sunshine stories that recovery happens and life is perfect afterward — the dirty, ugly, scary stories where people can see the resilience, they can see the strength and they can see how amazing people are that can live through this hell that is mental illness.”

You talk very openly about intrusive thoughts behind OCD which is great. Were you ever worried about being so honest about them?

Yes! For 13 years after my diagnosis and successful treatment, I stayed absolutely silent about what I had been through, especially about my suicide attempt and the themes of my OCD. Finally after a huge relapse in 2011, I really just felt so lonely and wanted to find other people who lived with mental illness. I knew they were out there and they were just like me, but I also knew that they were scared to speak out to. So, I just made the decision one day that I’d throw caution to the wind. I knew some people wouldn’t like it, but I didn’t care. I also knew that by sharing my story and the down and dirty details of this horrific disorder, I could save lives and point people in the direction of help. That concept far outweighed the possibility of being judged.”

In the U.K., “pure OCD” is still very misunderstood, which means the right treatment can be very hard to obtain. Do you think this is the same in America?

“I think the ‘right’ treatment for OCD is difficult to find anywhere. Why? Because very many therapists know very little about OCD and what evidence based treatment is and so they don’t do the right thing and refer out to therapists that are specialized. I think a lot of that is because they just don’t understand OCD and the severity of it, but I also think a lot of that is ego. This is exactly why I started my business. I do consultations for referrals/resources for OCD. I meet with people via Skype all around the world and help point them to therapists that are within their area or therapists that are willing to do ERP (exposure response prevention) therapy across state/country lines. I’ve been building a resource bank for years and I know many people in the OCD community, so I can always find someone who is accessible by internet to help with the right treatment. It has been incredibly rewarding to get to connect people with therapists who can change their lives.”

What would your advice be to somebody who is experiencing intrusive thoughts and wants to reach out for help?

“If an individual is experiencing intrusive thoughts and they want/need help, I would suggest that they find the necessary research/articles around this type of OCD written by the experts (Dr. Stephen Phillipson, Jon Hershfield, Jonathan Grayson, etc) and take that to their support system first so they can have allies. From there, research therapists who are experts in treating OCD, meaning they use ERP therapy primarily to treat OCD. If they are not using ERP, they cannot treat OCD. If someone is having trouble finding someone in their area, email me at [email protected], set up a consultation and I’ll get you pointed in the right path for help! Don’t wait! OCD is a chronic, medical illness that ebbs and flows. It does not go away on its own and needs effective treatment in order to manage.”

You do so much work towards bringing awareness to OCD and “pure OCD” which is very admirable. Have you seen many changes happening in respect to OCD and mental health awareness?

“Well, I’d say in my bubble of advocacy and awareness, yes! But, I think overall we are still at the beginning stages of a movement for bringing awareness and advocacy to individuals with mental health diagnoses and abolishing stigma. We have a long way to go before we don’t hear people saying they are ‘so OCD’ because they like their house clean!”

If you could give one piece of advice on recovery, what would it be?

“Recovery is fluid and it is a personal journey. It is a waste of time to compare your recovery to others or create a timeline for success and happiness in regards to the illness. There is a grieving process that happens when we develop mental illness and are diagnosed. It is OK to grieve the time you lost, the pain you’ve experienced and the trauma you’ve endured. It is a journey, not a race to the finish line!”

Find out more about Chrissie here.

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