How to Ask About My Disease/Disability

I’m never hurt or bothered when a friend kindly asks me about my syndrome. However, I have been hurt by strangers and friends alike — both children and adults — who have chosen to insensitively ask questions or make rude remarks about my anatomy. Words matter. Questions and conversations can be hurtful or encouraging based upon the words that are chosen.

I want to encourage you to kindly ask questions and converse with someone who has a disease/disability because you want to get to know that person — not because you’re simply curious about the person’s condition. I am a young woman with CLOVES Syndrome, but I am more than my syndrome. My syndrome is like the cover of my story, but it is not my whole story. If you read beyond the cover, then you will see that I have lived a fascinating life that fills me with gratitude. You’ll hear stories about bold faith, mastering challenges, and unexpected accomplishments despite all of the obstacles. I will gladly tell my story to my friends if they ask to hear it.

Here’s a little advice: First, typically don’t ask questions about someone’s medical information if you don’t know the person (unless the person has invited you to ask questions). Second, if you are asking your friend a question, then ask your question with a compliment and/or a kind remark. For example: People often comment on how quickly I can type with just a couple of fingers. If you’re one of those people, you could say, “I noticed that you’re able to type really quickly, and you seem to be typing with just a few fingers! I’d love to hear more about your story if you wouldn’t mind sharing it with me sometime!”I will gladly answer a question that is sandwiched between a compliment and a kind remark. I can’t speak on behalf of everyone with a visible disease/disability, but most of us are open to talking about our disease/disability with our friends, people who are actually interested in learning about the person with the disease/disability.

Once again, let me remind you that words matter. Choose to use uplifting words. Choose to compliment the person you’re conversing with instead of crushing their confidence. Choose to smile and speak kindly instead of acting disgusted by their appearance. And PLEASE choose to be interested in the whole person, not merely the person’s disease/disability. Let genuine friendship create the space for you to kindly ask questions, mutually exchanging information about your diverse experiences.