I’m very happy to share this guest post by my friend and co-author Seth J. Gillihan, PhD. Seth’s bio and blogs are listed at the end of this post. If you haven’t already, I’d suggest you check out Seth’s new book Retrain Your Brain: Cognitive Behavioral Therapy in 7 Weeks as well as his other guest post on my blog. Thank you for this great post, Seth!
Karen Robinson suffered with OCD for 24 years before finally seeking treatment. Fortunately she found effective therapy at a specialist clinic in the UK, which she described as “completely life-changing.”
Robinson chose to “pay it forward” and use her personal experience to help others, like Janet Singer and many others whose lives were profoundly affected by OCD. While still undergoing treatment, Robinson began researching why individuals with OCD delay getting help.
Unfortunately Robinson’s story is a common one among people with OCD—the typical gap between first symptoms and looking for treatment is 17 years. Whereas previous studies had used questionnaires to understand what accounted for this gap, Robinson chose to do one-on-one interviews. This approach allowed for in-depth discussion of the “barriers and enablers” of seeking help.
Robinson also let her participants know that she suffered from OCD, which likely increased their willingness to speak candidly about their experiences.
Robinson and her co-authors summarized her findings in a recent article published in Psychology and Psychotherapy: Theory, Research and Practice.
Barriers to Seeking Help
- Not Knowing It Was OCD: Even professionals can miss or misdiagnose OCD, so it’s no surprise that individuals with OCD and their families may not know what they’re dealing with. It’s especially difficult to recognize OCD when the content is not what we commonly think of (like hand washing and checking the stove).
- Stigma: The number one reason people delayed seeking help was that they simply didn’t want to tell people—even family members. Some feared that having a psychiatric diagnosis could hurt their career. Revealing one’s OCD seemed especially challenging when the content could be upsetting to others, like the fear of harming children. Others worried about their doctor’s response. Thus the people best positioned to help—loved ones and medical professionals—were often in the dark about the person’s OCD.
- Beliefs About One’s Symptoms: Several participants said they didn’t think their condition was “bad enough” to warrant seeking help—even when the OCD was consuming 3 hours of their day or influencing their decision about having children. Others said they simply never thought to get help. When OCD has permeated one’s life for several years, it may be hard to imagine an alternative. Some participants described feeling like they must be the only person having these kinds of struggles; in reality I’ve found that even seemingly “one-of-a-kind” forms of OCD are not unique.
- Concerns About Doctor’s Reaction: For many people with psychiatric diagnoses, the first professional they’ll talk to about their struggles is their family doctor, as was the case with Janet’s son Dan. Individuals with OCD often don’t tell their doctor about it because they doubt she’ll know what it is or be able to help—and perhaps with good reason. For example, Dan’s doctor concluded that his OCD was “no big deal,” which obviously did not turn out to be right. Other individuals worried about what the treatment might be—heavy-hitting medications with unwelcome side effects? An extended course of grueling psychotherapy? These fears about possible treatments made seeking help less appealing.
- Fear of Being Labeled a Criminal: Perhaps the most tragic reason to
avoid seeking help was the fear of being “locked up” for divulging one’s symptoms, which was common among people with obsessive fears of harming children. As one participant said, “I just thought other people would think, ‘Oh my God, what a monster.'” (See this related post: Mental Illness and Violence: Would I Do That?)
Of the 17 study participants, 16 had eventually sought help. Many of the factors that pushed them to seek help were direct antidotes to the barriers.
Factors that Enabled Treatment Seeking
- Reaching a Crisis Point: As discussed above, thinking one’s OCD wasn’t severe enough prevented help seeking. On the other hand, an acute crisis often drove a person to treatment, as fully half the participants recalled. Apparently it had to get quite severe to compel a person to ask for help; one participant described becoming “extremely depressed” and contemplating an overdose prior to seeking help (and then only at a partner’s urging).
- Nature of the Obsessive Thoughts: While obsessions about harming kids led to keeping the thoughts secret in some cases, the same thoughts spurred other individuals to “confess.” As one person said, “I thought my children were in immense danger.” Thus in these cases individuals didn’t seek treatment so much as turn themselves in.
- The Support or Urging of Others: OCD can be a very lonely illness, and the presence of others can be invaluable at any point in one’s journey to recovery. The vast majority of participants said people in their lives—most often family, and often friends—were instrumental in getting them to treatment. Even strangers played a part in several cases, through OCD Internet forums; those who have gone through similar struggles can be a tremendous source of information and support, as many of you have found on this and other blogs.
- Confidence in Health Care Providers: While concerns about a doctor’s reactions can prevent a person from seeking help, confidence in the doctor’s ability to help has the opposite effect. Apparently it’s not only about the doctor’s knowledge of psychiatric conditions; one participant decided to tell the doctor because she “was good at listening to people.” Simply showing that one is open and available to discuss a patient’s concerns can go a long way.
- Information From the Media: Multiple barriers to treatment can be overcome through an understanding of what OCD is. Thus it’s hard to overstate the importance of the media—including this blog—in shedding light on OCD. One study participant described watching a morning news show that featured someone with OCD, and said it was “just like a revelation! …. I was relieved to find out I wasn’t going to get sent to prison.” Sharing personal stories and accurate information about OCD changes lives.
Karen Robinson got her life back by seeking and finding treatment for OCD. The goal of her research is to “encourage people to seek help much, much earlier.” Understanding what helps and hinders treatment seeking is a big step in that direction.
If you delayed seeking help for your OCD, do you identify with any of the factors described here? Are there barriers or enablers that aren’t listed here that you experienced? Please leave a reply in the comments section below.
Seth J. Gillihan, PhD, is a clinical assistant professor of psychology in the psychiatry department at the University of Pennsylvania Perelman School of Medicine. He is the author of Retrain Your Brain: Cognitive Behavioral Therapy in 7 Weeks and co-authored Overcoming OCD: A Journey to Recovery with Janet Singer. Dr. Gillihan blogs on Psychology Today and his website. His clinical practice is in Haverford, PA, where he specializes in the treatment of anxiety, depression, PTSD, and related conditions.
Robinson, K. J., Rose, D. and Salkovskis, P. M. (2017). Seeking help for obsessive compulsive disorder (OCD): A qualitative study of the enablers and barriers conducted by a researcher with personal experience of OCD. Psychology and Psychotherapy: Theory, Research and Practice. doi:10.1111/papt.12090