Loving someone with OCD can be a gut-wrenching experience. When a loved one receives a diagnosis of OCD and begins treatment, this may come as a tremendous relief for the family. Often family members have watched their loved ones suffer for years prior to them getting the right diagnosis. Whether it’s your parent, spouse, child or sibling, you know the pain of watching OCD overtake your loved one to the point that they are just a shell of their former self. At first there are the attempts to appease the OCD, hoping to ease their pain. But then you discover that not only does your loved one seem to get worse, but OCD rituals also increase. Even when you realize that what you are doing isn’t really helping them, at least it seems to keep them surviving while allowing you to address the needs of other family members. This is especially true if there are children in the home who still need to be cared for and have their needs met. The name of the game becomes survival and all joy can be lost.
The Whole System
Years of living with someone with OCD causes significant disruption to the family system, so much so that the family member with OCD begins to feel like a burden. The personal journey that led me to specialize in the treatment of this disorder started with me growing up with a mother who had severe OCD. Back then, help wasn’t readily available and few people understood OCD. Trying to help someone with the disorder is a lot like being a hostage negotiator. It can make you feel like you have to meet OCD’s demands in order for your loved one to be released long enough for them to go to school or work or join the family for dinner.
My mother’s OCD often kept her consumed by fears of disease. Some of my earliest memories include investigating moles on my mom’s head for changes in color and size which she worried could indicate melanoma. I remember jabbing myself in the ear repeatedly with a Q-tip to see if it caused pain just so I could prove to her that everyone feels pain if they stick it too far down the ear canal. I even found myself spinning in circles in order to reassure my mom that it was normal to get dizzy if you move your head too quickly. These events were all part of everyday life living with someone with OCD, of the hostage negotiation that I lived through. In doing these things I thought I was helping her, doing what I could to allow her to be part of the family on whatever level she was capable. I wanted so badly to ease her suffering.
It’s Not Your Fault
While I understood intellectually that her condition wasn’t my fault, in my heart I felt guilty for ever experiencing joy at the same time that I knew my mom was suffering so much from her OCD. I felt selfish for wanting to have friends over or even asking my mom or dad for things I needed because I was so afraid to add an extra burden to their already burdensome lives. For many years I thought that trying to help by providing reassurance that her fears weren’t true was the right strategy. I have since learned that the very strategies I was using out of love were actually making things worse. They ultimately increased her inability to tolerate uncertainty, increased her overall anxiety, and ensured that she would remain on the hamster wheel that is OCD.
Since that time, I have had the opportunity to learn, both in training and in clinical practice, that the most loving response to a family member with OCD is to not participate in their compulsions. The key is understanding how to do this while at the same time remaining compassionate and supportive. It is important for families to know they didn’t cause the OCD and they can’t cure the OCD. However, they can learn stop contributing to the maintenance of the OCD. I have been amazed by the resiliency and courage of the families I have worked with and with the right tools, family members and OCD sufferers can work together as a system and change the trajectory of what once seemed like a hopeless situation.