Thomas J. A. Lehman MD
Why do I look different? What do I say to people who ask me why I look different?
One of the most difficult challenges for the family of a child with Parry Romberg syndrome is answering questions. At some point inevitably they will be faced by their child asking that question. How they handle their answer will play a major role in the child's view of themselves. First and foremost must come the admission that even the doctors don't know why this sometimes happens, but that it is clear that it is not anyone's fault. Every parent of a child with Parry Romberg syndrome knows that at some point they have wondered to themselves if somehow they caused the problem. Every child with Parry Romberg will wonder the same thing. It is critical above all else that both parent and child know that they are not responsible for the problem.
Once the family members have accepted that they are not at fault, dealing with questions from the rest of the world becomes the next challenge. People are naturally curious and even in the best of circumstances someone will ask, "What happened to your child?" Your child will hear you answering this question long before they have to answer it for themselves. How you deal with it will have a significant impact on their self image and their ability to answer the question in the future.
There are several key things to remember. First, the person asking the question is most likely well meaning -- getting angry at them will not improve the situation. Second, your (and your child's) medical information is privileged. Your doctor cannot share that information without your permission. You have no obligation to share it with strangers just because they asked. So, do you just ignore them? No, we all know that won't really work in most situations. But you can dismiss them quickly and quietly with a prepared answer. It is the preparation of yourself and your child that is important. If you have rehearsed your answer so that you can give it automatically without thinking then it can become no more annoying that stopping at a red light.
Every family must decide for themselves what their automatic answer is going to be. A long and detailed discussion of Parry Romberg syndrome is the last thing the inquisitive classmate or stranger is looking for. Quick short answers are best. There is no requirement that they be absolutely true or that you follow up on them. "It's a burn" "It's a genetic condition" "car crash" "Martians touched him/her" Be prepared, be quick, dismiss the questioner and move away unconcerned. The more comfortably you handle the situation the more comfortably your child will too. Obviously memorizing a quick short answer is something the child should be taught to do as well.
There will be people who need to know something more. Teachers, school forms, camp forms, baby sitters..... Here again however there is primarily a need for discussion of how to deal with the situation and the reactions of other children. None of these people need or have a right to a detailed medical explanation except to be reassured that nothing represents a danger to the child or the children around them. The confidence with which you can quickly provide them with a short dismissive answer will be translated into the confidence with which they can answer the questions of other children in the class room.
The key to all these situations is to recognize in advance that they are going to happen and be appropriately prepared. Prepare yourself (and your spouse and the child's siblings), prepare your child, and prepare the teachers etc. If you dread being asked questions your child will sense it and they too will dread being asked questions. As the parent you must lead and show the world (and your child) that a child with Parry Romberg is nothing to be afraid of and has nothing to be ashamed of.
Dr. Lehman is Chief, Division of Pediatric Rheumatology at the Hospital for Special Surgery in New York City, and Professor of Clinical Pediatrics, Cornell University Medical College.