Happy New Year! I’ve been on a bit of a break from posting Tuesday Q&As, and I’m happy to host Epifania Gallina in this first post of 2017! Learn more about her experience with OCD, stigma, and her secret Facebook support group.
When were you diagnosed with OCD, and how did you realize you might have it?
I was diagnosed with OCD in 2012 at the Columbia Psychiatric Institute as I participated in a research study for three days. At that point I had been severely suffering for two years and I knew I had OCD because my symptoms matched the criteria perfectly, but I was too afraid to find help because I was embarrassed. I come from an Italian culture that does not acknowledge the need for mental health, hence I thought I could just “get over it” on my own. I was also too afraid to go to a therapist because as we all know, OCD tells us not to find help because “the therapist will say it’s not the OCD, it’s us.” Don’t let OCD lie to you. That’s a big lie.
You run an OCD support page on Facebook called “Living on edge: Taking back your life through ERP.” For my readers who may not know what ERP is, can you explain? And what can members expect from the group if they join?
Yes! I spend most of my days peer coaching others with OCD and I would not change that for the world. I started Living on Edge a year and four months ago with the purpose of giving people a safe platform in which evidence-based (scientifically proven) information was posted and which limited compulsive behavior. This means that people can ask any questions, but I make sure that the answers given are not reassurance based (a compulsion), or a continuous thread of comments that are compulsive. This is not to point the finger at any other group because many support groups helped me when I needed a guidance; however, the majority of groups present too many compulsive posts and sufferers are distressed because they are receiving more and more reassurance (which works for a split second) and do not get additional support. My goal was to allow people to ask any questions they had but with a sole purpose: not giving each other reassurance or compulse together.
The main component of the group is that of coaching one another with cognitive behavioral therapy techniques as well as other tools that might help. I always make sure I read the comments and guide everyone toward the more therapeutic side of things. I am also always available to answer people’s private messages whenever they send them to me. Exposure and response prevention (ERP) is considered the best treatment for OCD with at least 70 to 90 percent effectiveness in treating people. It consists in gradual exposure to the person’s obsessions with the focus of eliminating the compulsions surrounding the obsessional theme. Indeed, as scientists have discovered, it is not the obsession that we need to eliminate, because OCD themes constantly change, but the compulsion. Once the compulsion is eliminated, the obsession does not bother the person as much and at times it disappears. However, most importantly in ERP is teaching the person to accept uncertainty, which is a quality that is necessary to live a healthy life. Since OCD is a doubting disease, it consists in wanting the person to have 100 percent certainty in everything, whether it is contamination, relationships, etc. If the person does not understand something thoroughly then the OCD mind turns on it. In reality, there is no such thing as 100 percent certainty; hence, as we don’t really know what will happen to us in life, we cannot know if something is right or wrong, or if something will or will not cause us harm, but we can still live by our values.
In addition, we have billions of thoughts every day. ERP teaches us that we don’t have to escape the negative thoughts or figure them out. We have to learn how to accept them and choose those that are relevant to us because it is okay to let go of others. In a few words, thoughts are not facts, but we just have to let them be. This is truly hard for someone with OCD, but I promise, it is so worth it. ERP helped bring my OCD from moderate to very mild in two years of therapy. It is important to remember that many people still need to take meds in addition to having ERP based on the degree of severity. This is okay also. Never be ashamed of your path.
While you run the Facebook group and have support and understanding from your family, you don’t discuss OCD on your personal Facebook page. Why is that?
Unfortunately, I am still not open about OCD with the world, and although discrimination in the workplace is not permitted, there are many stigmatizing factors that I have to consider, hence I cannot share with everyone. I hope that will change one day.
You attended the International OCD Foundation conference last summer. Had you been to the conference before? What did you like best about your experience there?
Yes! I love the conference because every time I am around other OCD sufferers I feel like I can be myself. They are truly the kindest and most genuine people to be around. I consider them my second family. Everyone is so supportive of one another and there are tons of fun and informative things to do every year. In 2015, I attended as a volunteer and after that I started Living on Edge, so in 2016 I really wanted to speak and tell my story and that is what happened! My favorite moments of this year were the virtual camping (live exposures) and all of the peer support groups, as well as the main dinner and dance, of course!
What do you consider the biggest misunderstanding people have about OCD?
The biggest misunderstanding people have of OCD is that it is a perfectionistic disease or that it is not that big of a deal. OCD is a debilitating disorder, but it can also be conquered if treated on time and effectively.
If you could give just one piece of advice to others with OCD, what would it be?
You are not alone. There is help out there and you can defeat this disorder. Please, please, don’t forget that you are stronger than this. The International OCD Foundation has great information on finding help and support groups like mine that will guide you toward finding help. You can always contact me at firstname.lastname@example.org. My support group is secret, so I can explain how to join it. Best to all!