Stories of Hope: An Interview with Janet Singer
This is part of a series featuring individuals who share their life experiences with mental health issues. Recently, I asked blogger, author and mental health advocate Janet Singer about her son’s mental health challenges and some of the lessons her family has learned over the past several years. Here’s our interview:
DS: Tell us about when you first started noticing concerns related to your son’s mental health. How did these issues continue to affect him and your family before he received treatment?
JS: Honestly, all my husband and I noticed was that our son Dan seemed quite anxious and he wasn’t sleeping well, but we attributed this to the fact that he was waiting to hear about college acceptances. With the help of the Internet, Dan actually diagnosed himself with obsessive-compulsive disorder (OCD) and then told us he had the illness.
Of course in hindsight there were signs that we missed, specifically Dan’s avoidance of certain people, places, and things. Though we obtained treatment for Dan immediately, it turned out to be the wrong kind of therapy, and while he was away at school, 1500 miles from home, his OCD became severe. He couldn’t eat, he would get “stuck” in places and not be able to move for hours and hours at a time, and he isolated himself. He was barely functioning and this obviously impacted his life greatly.
DS: What was the turning point that led your family to decide to seek help for your son?
JS: I knew Dan didn’t sound well on the phone and so I flew down to see him at school. I found him in the situation described above and was terrified. I thought I had lost my son. Of course at this point I realized the “help” he had been receiving for his OCD was not the correct treatment. Dan and I met with a psychiatrist and clinical psychologist near his school who both recommended he attend a residential treatment center for OCD, which he did.
DS: What has Dan’s treatment consisted of, and what has worked well for him?
JS: Thankfully the residential treatment center he attended used a Cognitive Behavioral Therapy known as exposure and response prevention (ERP). This therapy literally saved my son’s life. It is the number one psychological treatment recommended by the American Psychological Association to treat OCD, and when done correctly, it works. Unfortunately many people (including therapists) are not aware of this therapy (or choose not to learn about it and/or use it).
After his nine-week stay at the residential treatment program, Dan continued ERP therapy weekly with a qualified therapist for the next few years. One of the great things about ERP therapy is that you learn to be your own therapist; that is, you learn how to respond appropriately to your obsessions to keep OCD under control.
Over the course of two years or so, Dan was also prescribed ten different medications. At one point, he was taking six meds at a time. Many of these medications, we now know, are not typically helpful for those with OCD, and have even been known to exacerbate symptoms. Medication for OCD is such an individual thing. While I know it is helpful for some people, Dan felt better once he was weaned off all his medications. He has been medication free for almost seven years now.
DS: How are things going for Dan and your family now? What have you learned that has helped your son and your family stay positive and healthy?
JS: I am incredibly grateful and thankful that Dan continues to do well. He has been living on his own since graduating college and is working in his chosen field. He is living a full and happy life. He still has OCD – it is classified as mild – but it is not hindering him because he knows how to respond to it.
One major lesson our family learned is how to respond to someone who is dealing with OCD. Instinctively, most loving families will do whatever they can to keep their child’s anxiety levels down. For example, if Dan couldn’t enter a certain room in our home, I would get whatever he needed (perhaps a notebook) from that room for him. What I was doing was accommodating him, and that is the opposite of what I should have been doing.
Allowing the OCD to be “in charge” only fuels the disorder and makes it stronger. Once I realized this, I was able to act appropriately. In the case above, that would involve saying something like, “Dan, you can’t go into the room because of your OCD. I am not going to participate in any aspect of this disorder so you’ll have to go into the room yourself to get your notebook or do without it.” Appropriate family involvement is an important part of recovery from the disorder.
I have learned so much from my family’s journey. While I don’t know of anyone else in my extended family who has been diagnosed with OCD, we do have our share of anxiety. I have always been somewhat of a “what-if” person, always worrying about the future and imagining the worst-case scenario. I have gotten much better at just living in the present, being mindful of NOW (I know it sounds cliché, but it is actually helpful), and just accepting the uncertainty of life.
These are all things that are stressed in therapy for those with OCD. Also, instead of living with the mentality that the world is a dangerous place, I choose to see the universe as friendly, and that has made a huge difference in my perspective on things.
I believe my husband and other children have benefitted from these lessons as well, and could probably add a few of their own!
DS: Tell us about your book you wrote to chronicle your son’s journey: “Overcoming OCD: A Journey to Recovery.”
JS: As mentioned above, Dan did not receive proper treatment for his OCD when he was first diagnosed. We were led down the wrong path. Throughout his ordeal, I always thought our family had just been unlucky because we had trouble finding the right help. After the dust settled and I became involved in OCD advocacy, I learned that most people are steered down the wrong path when it comes to treatment for OCD. This was so unacceptable to me and I vowed to get the word out that OCD, no matter how severe, is treatable, and ERP therapy is the treatment of choice. I did this first through my blog, all the while working on my book.
What makes Overcoming OCD: A Journey to Recovery unique is that it not only tells the story of what helped and what hurt in my son’s journey through OCD, it is also interwoven throughout with expert commentary by clinical psychologist Dr. Seth Gillihan, PhD, who specializes in treating OCD and anxiety disorders. So readers not only gain insight from my family’s story, they also learn the facts, including up-to-date research, about many aspects of OCD.
Perhaps most importantly though, the book is a story of hope and the power of family.
DS: What would you like to say to families to encourage them when they are still facing mental health challenges with one of their family members?
JS: First and foremost, there is HOPE. The most frightening thing for me when Dan was doing so poorly was not knowing if my son would ever get better. I now know that with proper treatment, OCD, as well as most other brain disorders, is treatable. Back then if someone had told me, “My son had severe OCD also and today he is doing great,” that would have made all the difference in the world to me. But there was nobody to tell me that, so when my son got well, I realized I could provide that hope to others. As bad as things might be right now, in this moment, they absolutely can get better and your loved one can go on to live a wonderful, rewarding life.
The other thing I would suggest to families is to educate yourselves as much as possible about your loved one’s disorder and its proper treatment. While mental health professionals might be experts on OCD, for example, you are the expert on your child, spouse, or other family member. Your thoughts, feelings and opinions should be taken seriously, and if they’re not, that is a cause for concern. Don’t be afraid to speak up and ask questions, and keep asking those questions until you feel they’ve been properly addressed. Because when you get right down to it, nobody cares about the well-being of your loved one more than you.
Janet Singer is an advocate for OCD awareness, with the goal of spreading the word that obsessive-compulsive disorder, no matter how severe, is treatable. In 2008, her son Dan suffered from OCD so debilitating he could not even eat. Thanks to exposure and response prevention (ERP) therapy, the first-line psychological treatment for OCD, Dan made a remarkable recovery. Janet writes regularly for PsychCentral and was a long-time contributor to Mentalhelp.net. She has been published on many other websites and has been the keynote speaker at OCD and NAMI conferences. She started her own blog, ocdtalk, in 2010, and it currently reaches readers in 172 countries. She uses a pseudonym to protect her son’s privacy. You can reach Janet via her blog, Facebook, or Twitter.
Thanks so much to Janet for sharing her family’s inspiring story of hope!
Here’s a question: Would you like to share your story of hope? I plan to feature more personal accounts like this from time to time on my blog. If you are interested in sharing your story, please notify me via my contact page. Also, please subscribe to my blog and feel free to follow me on Twitter, “like” my Facebook page, or connect on LinkedIn. Thanks!