Podcast Summary: Get to Know OCD – “A Mother’s Story Of OCD, Substance Abuse, Loss, And Legacy”

Host: Dr. Patrick McGrath (NOCD)
Guest: Margaret Sisson, Executive Director of Riley’s Wish
Date: May 29, 2025

Episode Overview

In this deeply moving episode, Dr. Patrick McGrath sits down with Margaret Sisson, founder of the Riley’s Wish Foundation, to discuss her son Riley’s battle with OCD and substance abuse, the devastating loss that followed, and her ongoing mission to improve support for families navigating similar struggles. The conversation candidly explores underrecognized intersections between OCD and substance use, treatment gaps, parental guilt, and the legacy of advocacy born from personal tragedy.

Key Discussion Points & Insights

1. Riley’s Early Experiences with OCD

• Onset and Recognition: Riley’s OCD symptoms began around age 11–12 after a summer camp experience, marked by severe separation anxiety and reassurance-seeking.

  “He was starting sixth grade...he would throw up every morning. He started doing, you know, checking stuff.” – Margaret (07:34)

• Lack of Awareness and Misdiagnosis: For years, Riley cycled through ineffective talk therapy and supportive but misguided school counseling.

  “We went for probably four to five, six years in the wrong therapy, talk therapy. Nothing got better.” – Margaret (07:32)

• Role of Family: Margaret's father, a pediatrician, first suggested OCD but resources and specialized knowledge were lacking.

2. The Slide Into Substance Use

• Self-Medication for Relief: Riley turned to alcohol and later other substances in high school to “turn off” his anxious, intrusive thoughts.

  “He later said, that’s when my brain turned off.” – Margaret (04:00)

• Substance Use & Academic Success: Despite winning honors in school and leading in athletics, Riley’s substance use was about survival, not socialization.

  “He didn’t drink to socialize. He drank to stop his brain and got really bad.” – Margaret (08:00)

3. Treatment Challenges and Dual Diagnosis

• Inadequacy of Individualized Care: Effective OCD treatment (Exposure and Response Prevention, ERP) came late; substance use remained a taboo, often unaddressed even by professionals.
• The Shame Factor: Stigma and shame around substance use compounded Riley’s suffering and made open discussion and treatment difficult.

  “There was a shame that he felt even more so than the OCD, because he hated—he kept saying, ‘I hate what I’ve done to you all’” – Margaret (11:00)

• Treatment System Failures: Many OCD-focused programs required abstinence from substances; addiction centers rarely addressed mental health. Residential programs often dismissed Riley for substance use, or prescribed benzodiazepines that triggered relapse.

  “Every year they were all saying, ‘you gotta be clean for 90 days before we can even treat this OCD.’ And Riley kept saying, ‘I don’t think that’s right.’” – Margaret (19:29, 20:00)

4. The Chicago Conference Turning Point

• Finding Community and the Dangers of Blind Spots: Attending the International OCD Foundation Conference initially led to relapse (due to the bar setting), but also galvanized Margaret and Riley to address the “silent epidemic” of co-occurring OCD and addiction—including launching support groups and panels.
• Systemic Blind Spots: Lack of open discussion about substance use in OCD communities leaves families adrift.

5. Tragic Loss and Birth of Advocacy

• Riley’s Death: Riley died from an accidental overdose after being prescribed benzodiazepines again, despite knowing the risks.

  “He was in his master’s program for social work because he kept saying, if I can help other people, no one will go through what I did.” – Margaret (21:54)

• Turning Grief Into Action: Margaret founded Riley’s Wish to support families and break the silence and shame around dual diagnoses.

  “I remember sitting on my front porch that next morning thinking, I'm either not going to get out of bed or I got to do something. And I decided to do something.” – Margaret (22:46, 44:57)

6. Changing the Clinical Conversation

• Importance of Asking the Right Questions: Simple screening questions about substance use can open the door to honest discussions and integrated care.

  “Even if it starts with two simple questions: Have you ever used a substance, prescribed or not prescribed, more than you intended to, or had ill effects or consequences from it?” – Dr. McGrath (24:40)

• Need for Shame-Free Environments:

  “You have to say it’s okay to tell me…Riley got to where he just would lie because he couldn’t get the help with the OCD if he told them about the substance use.” – Margaret (25:12)

7. Practical Advocacy and Legacy Work

• Riley’s Wish Foundation Initiatives:
  • Hosting lecture series with collegiate recovery programs to educate on both OCD and addiction.
  • Promoting collegiate recovery programs as vital supports for students with substance use histories.
  • Expanding partnerships and aiming to educate both parents and clinicians.
• Advice to Families:
  • Do not blame yourself; most parents do the best they can with the information available.
  • Seek specialized resources for both OCD and addiction early.
  • Recognize the ripple effect on the whole family and seek broad-based support.

8. Vision for the Future

• Breaking Stigma and Double Taboo:
  • Double stigma (“mental health x addiction”) still prohibits open dialogue and effective intervention.
• Integrated Models of Care:
  • More programs must treat OCD and substance use together.

  “If more programs, residential, treated OCD and they treated substance use—that shouldn’t be a big deal. We know what, 45% of people struggle with substance use.” – Margaret (49:32)

• Personal Healing Through Advocacy:
  • Helping others is also a healing path for survivors.

  “Those who help others often get better and get healthier…this foundation is a healing for me.” – Margaret (45:31)

Notable Quotes & Memorable Moments

• Turning Point

  “I remember sitting on my front porch that next morning thinking I’m either not going to get out of bed or I got to do something. And I decided to do something.” – Margaret (22:46)

• On the Perils of Systemic Blind Spots

  “He got kicked out of two residentials because of the substance use, because they put him on a benzo. And that set his...addiction craving.” – Margaret (20:00)

• Cutting Through Guilt

  “I felt like I did everything I could that I knew I could do…Were there more things that I didn't know? Yes, certainly. But I did everything that I could do, and I knew I couldn't live with him 24/7.” – Margaret (15:08)

• Hope & Legacy

  “There's hope out there…Find the right one. Make sure you use resources that you know are credible and there is help out there and don’t feel ashamed or embarrassed.” – Margaret (50:41) “It keeps a little bit of Riley in the world…and I a lot of times say, hey, thanks, bud, because that was his wish, to help people.” – Margaret (44:57)

Timestamps for Important Segments

• Riley’s Childhood and OCD Onset: 04:51 – 09:19
• Substance Use & Its Role: 09:19 – 13:46
• Parental Guilt & Foundation Beginnings: 14:09 – 15:59, 22:46
• Chicago Conference & Double Stigma: 16:25 – 20:39, 42:12–43:19
• Treatment System Critique (Benzo Risks, Program Exclusion): 20:40 – 22:33
• Advice for Clinicians—Ask the Hard Questions: 24:40
• Riley’s Wish’s Mission & Impact: 35:06 – 38:08
• Vision for Future, Realistic Hopes: 38:08 – 42:12, 46:25 – 47:07
• Closing Messages/Acknowledgements: 50:41 – 53:03

Useful Resources & Next Steps

• Riley’s Wish Foundation: www.rileyswish.com
  Margaret offers direct support and resource guidance for families and individuals impacted by dual diagnosis.
• NOCD: nocd.com, for specialized, accessible OCD treatment and advocacy.
• Relevant Community Organizations:
  • International OCD Foundation
  • OCD Game Changers
  • Collegiate recovery programs at universities (growth highlighted in this episode)

Episode in a Nutshell

This conversation stands out for its candidness, mutual empathy, and unwavering focus on real change. Margaret Sisson’s journey transforms private pain into public advocacy, demanding new models of treatment and greater compassion for families and individuals fighting simultaneous battles with OCD and substance use. Both she and Dr. McGrath underscore that there is hope—through education, better clinical questions, and collective action, informed by lived experience.

Contact for Support:
Margaret Sisson – Email and phone available via rileyswish.com
For clinical help: nocd.com

For further learning, subscribe to the Get to Know OCD podcast or follow NOCD on YouTube for more stories and resources.