Many of us in the OCD advocacy community got into it because we have OCD ourselves. Margaret Sisson became an advocate because her son Riley had OCD. She has done so much to spread awareness, not just about OCD but addiction as well. Even after Riley’s tragic death in 2014 Margaret has continued to go above and beyond and advocate for people with OCD, and her goal is to keep Riley’s legacy alive — she founded Riley’s Wish Foundation and presented on his behalf at the OCD Conference in Boston.
As much as Riley struggled with both OCD and addiction, he never stopped trying to educate others. He presented on several panels at the OCD Conference and he was working toward his Master’s degree in counseling. Riley was hilarious. OCD is hard. It’s draining. It’s depressing. Somehow Riley was able to joke through much of that pain and made others laugh.
Thanks, Margaret, for continuing to be a voice for Riley, and for us.
You were given the IOCDF Hero Award at the 2014 OCD Conference. Much of the work you were doing in the OCD community was on behalf of your son Riley, who had OCD. How did you decide to get involved in advocacy?
When Riley and I went for the first time to the conference in Chicago we both felt we found support, and for once others understood! I decided that by helping and being an advocate, I not only helped others but also Riley. I was very humbled to receive the Hero Award. Most importantly, I was able to tell Riley that it was for him! He was my hero!
It must have been painful to see your child suffer through this illness, and to hear some of the unpleasant details, including those about his addiction. How did you push past the pain in order to help Riley?
Watching your child suffer is very difficult no matter how old they are. But the more I educated myself and researched OCD the more I felt I could help him. I needed to understand what he was going through, and that way I was more equipped to get him to the right treatment.
I think it must be challenging for parents to help young adult children who are striking out on their own and becoming more independent, and perhaps more resistant to parental guidance.
It is hard to help an adult child with OCD. You are encouraging independence but oftentimes that is hard because of their struggles. My advice for any parent whose adult child is going off to college or living independently is setting up a good support team. Colleges are starting to implement programs that help students who struggle with mental health and addiction. The programs are designed to be a community for students and they provide the peer support and accountability necessary to enable sustained recovery and mental health counseling. This gives the students the ability to pursue an academic and social experience in higher education. The program also provides support and encouragement to give back to the community.
Riley self-medicated, and unfortunately he became addicted, leading to a dual diagnosis of OCD and addiction. How did the diagnoses affect each other, and how did you and Riley approach the dual diagnosis?
Unfortunately, when struggling with substance abuse it became a vicious cycle. Treat one and the other goes untreated and so on. Fortunately, residential facilities are now implementing treatment together. Let me share information from Riley’s presentation on OCD and addiction at the 2014 OCD Conference:
“Substance use disorders (SUDs) are categorized by the dysfunctional use of a substance causing significant impairment in functionality or marked distress. SUDs generally include cravings in between instances of using, obsessions around wanting to use, and the compulsive ingesting of substances. The diagnostic criteria for SUDs, as outlined in the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV), are separated into categories of abuse and dependence depending on the presence of withdrawal symptoms when substance(s) are absent from the body (4th ed.; DSM-IV; American Psychiatric Association, 1994).
Both OCD and SUDs involve obsessions and compulsions. OCD can manifest in a variety of ways. With OCD, obsessions generally coincide with the fear that something bad will happen if compulsions are not carried out. With SUDs, triggers can include emotions, cognitive distortions, false beliefs, and other people, places, and things. Addicts/alcoholics generally obsess about using. With SUDs, rituals include finding ways to use, using, and preparing to use again. With OCD, rituals can include a variety of behaviors and thoughts. Using drugs and/or alcohol can be one of them.
Those with obsessive-compulsive disorder often know that their obsessions and compulsions are not based in reality. They often know that what they’re doing isn’t realistic, that it doesn’t make sense. They often see a decline in functioning, they’re aware of the time they are wasting, and they experience distress. However, they still continue to obsess and carry out the associated compulsions.
Those with SUDs are not so different. Addicts/alcoholics often see the negative consequences associated with their use, and they know the high isn’t worth it. They see clear indications of dysfunction, physical illness, distress, etc. However, they too struggle to stop themselves without help. Many scholars have collected data indicating a strong positive correlation between OCD and SUDs.”
How old was Riley when he was diagnosed with OCD? How did you realize that OCD might be behind his symptoms? Once you knew it was OCD how did you go about treating it?
Riley was diagnosed with OCD when he was 12. My dad was a pediatrician and he actually diagnosed him after I explained his symptoms. It started with hand washing and extreme anxiety over school. The unfortunate part was he spent years receiving the wrong therapy. Talk therapy was all he received for over five years. Not until his senior year did we finally find a therapist who was experienced in ERP. I think that is so important for parents to find the right therapy. The IOCDF is a great resource for families.
Let’s say someone reading my blog also has a dual diagnosis of OCD and addiction and hasn’t told her parents about either illness. How should she approach the topic with them?
This is what I would like to concentrate on through Riley’s Wish Foundation. I want to continue raising awareness and educating others about OCD and addiction. I think we made great headway at the IOCDF conference this year. I was fortunate enough to speak on three panels that discussed OCD and addiction and was so encouraged with the feedback we received. The plan would be to set up a mini track for next year’s conference that continued discussing the dual diagnosis and how best we can help those who struggle with the dual diagnosis.
I met you and Riley at the 2014 conference in L.A., and he was a hoot! I was practically in tears when he presented at a panel about preventing relapse; I was cracking up. I was shocked when I learned of his death less than two months later. Your life was turned upside down, but you have been determined to carry on Riley’s legacy and help others in need. You started a Facebook page called Riley’s Wish, you presented at many sessions at this year’s conference in Boston, and now you’ve officially launched Riley’s Wish Foundation. How can others get involved to help spread Riley’s legacy or advocate?
I think being an advocate is a real personal decision. Some people are not comfortable telling their own story and that is OK! Being an advocate can also be getting involved with your local affiliate, starting a support group, or getting involved with the IOCDF conference. The conference was life changing for both Riley and myself. I will never forget the support we received at our first conference. After that, Riley and I both felt compelled to help. Riley started the first OCD/addiction support group with Jared Kant. The next year he did his own panel with several of the top doctors. He started the movement to talk about OCD and addiction. He wanted so much to figure out how to help himself so he could go out and help others. I feel that is what I’m supposed to help with now. That way I can honor Riley’s legacy and help others. I think he would be pleased.
If you could share just one piece of advice with parents whose children have OCD, what would it be?
Educate yourself. The better you understand OCD the more equipped you will be to help. Educate yourself about ERP and the ongoing research on OCD. As a parent, you are your child’s best advocate! And some personal advice: Humor and laughter are good medicine, too. Riley would be the first to tell you that!