“What’s wrong with…”: A Guide to Answering Personal Questions About Having a Skeletal Dysplasia


Lorraine Montuori, LCSW
Social Worker
The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias
Hospital for Special Surgery

“What’s wrong with…”

“…you?”
“…your child?”
“…your sister?”
“…your nephew?”

It’s a question that no one wants to be asked, and yet, that same question will be asked many, many times—especially when it comes to one’s physical presentation.

Inherently, the question is disturbing, because it hits the recipient at his/her core and underscores the undeniable—something is different, not like everyone else. Individuality is fine, it seems, as long as it is not visible. Most strive to be different while physically looking like everyone else. Blending in and standing out, all at the same time, is the ideal, safest form to take. So what happens when it is obvious that there is a difference?

There is no recipe or exact right way to deal with this question. The first step is to figure out if you want to deal with it. Do strangers need to be apprised of your or your child’s medical issues? Do you want to handle it on a “need to know basis”, i.e., immediate family, school staff, caregivers, close friends, possible romantic partners? Do you want to take every opportunity when the question is asked to educate someone about skeletal dysplasias in general, or the specific dysplasia in detail?

In my experiences when dealing with this topic with children and their families, it seems less difficult for a child to answer that question about him/herself than it is for parents to answer the question about their child. It is the nature of parents to want to protect their child from sources of discomfort and pain. Unkind words, unfortunately, become part of everyone’s experience. However, for parents who have a child that cannot do anything about their height, it is a harsh (nearly daily) reality. Nevertheless, the child’s ability to answer that question is clearly dependent on how the family has come to understand the child’s dysplasia and their comfort level with explaining it to the child. Parents, understandably, hit a saturation point when educating family, friends, and strangers on the subject. Ideally, this will coincide in a child’s development with an opportune time when he/she can comfortably answer the question.

The use of language is important and telling. Key words and phrases can be very useful. For example, some people use the phrase “little person” interchangeably with “dwarf”; others prefer one over the other. Some people may be more descriptive: “I am an achondroplastic dwarf.” Others may choose to focus on the function, not the condition: “My bones grow differently than most people’s bones.” Before a child can offer an explanation to someone else, it is important to have the child have an age appropriate, positive explanation that he/she can understand. To support growing self-esteem, many parents will tell their child, “There is nothing wrong with you.” However, the world is not making the child’s growing self esteem its priority, so he/she needs to be prepared for the inevitable question. The delicate balance is helping the child to be proud of who he/she is while acknowledging that there is a visible difference in appearance.

In group work with children of different ages who have a skeletal dysplasia, I have found some common responses to the questions, “What’s wrong with you?” or, “Why are you so short?” Young children, ages 6 and under, have routinely answered “I don’t know.” Some of them probably truly don’t know, but I suspect that the main culprit is that they truly don’t know how to answer the question. School age children (ages 6–10) tell me stories about educating classmates, people in grocery stores, teammates, or grandparents’ neighbors on the science (as they understand it) of having a skeletal dysplasia. Tweeners (ages 10 – 14) get a little more spiritual or philosophical in their answers: “That’s the way God made me.”; “It’s just the way I am.”, etc. Teenagers (ages 14 and over) perfect the eye roll and dryly say, “Nothing,” or the even more confounding “I dunno.” Most of the teens recall going through the evolution of answering the question at different stages of their childhoods and reaching, not unlike their parents, a saturation point with answering questions. However, what is key is that they know the answer, understand the answer, and feel the confidence to decide whether or not they even want to answer. In more than 100 interviews with kids with skeletal dysplasias, the answer to the most important question, “If I could be anyone I wanted to be, I would be…?” has been unanimously, “Me”.

A perfect answer.

 

Find out more about skeletal dysplasias.

For more information visit HSS' Center for Skeletal Dysplasias.

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