A Message for Parents and Siblings

by Judy, Denis, and Carrie Asselin

If your child or sibling has been diagnosed with BDD, your family life has most likely been dramatically impacted by the disorder, if not thrown into turmoil. Ours certainly was. Everyone was affected when our seventeen-year old son, Nathaniel, who since age 11 had struggled with what we thought was OCD and anxiety, suddenly couldn’t leave the home if he had a tiny blemish or nicked his chin shaving. Family meals were tense, outings were canceled, vacations derailed. The intensity of his BDD symptoms, and their impact on his schooling, social, and family life were overwhelming for our son, for us, and for our daughter.  In hindsight, we offer some advice for how to navigate uncertain waters.

While seeking care for your loved one with BDD, it is critical also to take care of yourself, to find support for your other family members, to get involved in the sufferer’s treatment if at all possible, and to keep communication in the family open. BDD is a serious, chronic condition that will not go away overnight, and that will require everyone’s love, patience, and effort to address and overcome.

Blaming

Early on in recognizing and treating the disorder, we as parents continually scanned family dynamics and past events for what we might have done to cause this debilitating condition in our son. “We shouldn’t have changed his school.”  “We should have home-schooled him.”  “Judy shouldn’t have gone back to work so early after our daughter Carrie’s birth…” and on and on. The origins of BDD are complex and rarely traceable to one event, or family pattern. Genetics play a role, but do not provide the whole answer. And even the genetic link can be a source of guilt: “If only he hadn’t inherited my tendency towards OCD or my perfectionism.” Blaming ourselves sapped energy that would have been better used to support treatment and to take care of ourselves and our other family members.

Self Care

Watching our beloved son suffer from BDD was excruciating, eliciting emotions that ran the gamut from fear, to anger, to sadness, to profound frustration when treatment didn’t provide relief fast enough from his symptoms.  It is critically important that to whatever extent possible you maintain routines in your life so that you can find respite from the emotional challenges of living with someone with BDD. That said, if your child’s care demands more time than you can manage while working full time, see if you can take some family leave, or arrange to do some work from home so that you aren’t making impossible demands on yourself.  The International OCD Foundation can help you find support groups for parents so that you will know you are not alone, that other families are going through the same struggles, and that your family has not been singled out for suffering. The Annual OCD Conference is also a great opportunity to meet other parents and families going through similar circumstances.

Family Support

In addition to finding for your loved one a trained CBT therapist who understands BDD, seek professional support for yourself and the rest of the family. Since BDD can severely impact family relationships, addressing the heartache that those changes can elicit is critical. Otherwise, in addition to the BDD, the family begins to suffer the consequences of unspoken resentments and misunderstandings. Having opportunities to process the grief that comes when family harmony, traditions, and everyday life are disrupted will help all of you support each other as you focus on effective treatment for the sufferer. Even if the sufferer does not have insight into their disorder, which is often the case with BDD, remind them frequently that it is BDD, not their character, that is to blame for the disruptions in family life.

Supporting Siblings

Living in the arena of BDD impacts everyone, even when siblings seem fine, and tell you they are fine. The symptoms of BDD to a sibling (and even to parents, and certainly to those outside the family) can seem bizarre, illogical, and even willful on the part of the sufferer. “Why doesn’t he just stop?” our young daughter would ask when her brother first started copying her movements and spending hours in the bathroom mirror checking. When our son could not participate in family events or come on vacations, or dominated our time and energy, our daughter felt cheated, angry, and most of all sad, but she carefully kept those feelings to herself, not wanting to add to our burden.

Include your other children in treatment conversations whenever possible. Siblings need the chance to talk about and process not only the severity of the disorder and the intense shame the sufferer feels, but also how the disorder is impacting their own lives and their role in the family. Facilitating conversations can be difficult and sometimes impossible, but a good therapist can help; no one in the family should feel left on the periphery as the disorder disrupts family patterns and dynamics.

Involvement with Treatment

Wherever possible, get everyone in the family engaged in your child’s treatment, especially if your child is still living at home. Therapy sessions might last a few hours a week, but the family is on the front line with the disorder 24/7. By encouraging and cheering your child on as she uses skills learned in Cognitive Behavior Therapy sessions and other aspects of her therapy and by giving a role to siblings, the family can support the sufferer’s progress while gaining a valuable sense of engagement. The alternative — standing helplessly on the sidelines and watching your child suffer — can be debilitating. Even if involvement means vocalizing why you cannot participate in rituals or offer reassurance, you can do so in a positive and supportive way so that your child knows you are aware of how hard following through on treatment can be. For more about treatment for BDD go here.

Make Your Voice Heard

BDD is poorly understood and is still a completely unknown disorder to many people even though it affects 3-6 million people in the U.S. alone (2% of the population). When you include in those numbers the family members who suffer with their loved ones, the impact of BDD is staggering. Like many brain disorders, BDD causes behavior abnormalities, and so families are loathe to talk about it, whereas we would never hesitate to share with friends and colleagues that a son, daughter, or sibling had a brain tumor or leukemia. And why is that? Many people, and perhaps even we ourselves, believe that on some level BDD results from a major character or family flaw, or lack of will power, and attach stigma and judgment to those who suffer from it, thus piling shame on top of already intense pain. This is completely unjust. By speaking out forcefully and clearly about the needs of those who suffer from BDD and their families, we will attract the research money needed to reveal the causes of this devastating illness and to develop more effective treatments. Becoming an advocate for greater awareness and understanding can become a powerful part of the healing process.

You can read more about our family’s journey with BDD at our website, www.walkingwithnathaniel.org.