How To Avoid Catching Foot-in-Mouth Disease
“Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease?”
My friend recently asked me this and I’ve gotta say it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior. I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me.
Top Five Worst Comments/Reactions I Get From People When They First Meet Me
5. Blurting out, “What’s wrong with you?”
4. Spontaneously asking, “Why are you soooooo skinny?”
3. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?”*
2. “Are you a witch?”
1. Pretend not to notice I look different when meeting me, but determine not to pursue a friendship with me because I’m weird looking.
*I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflates and makes me look pregnant (only on my right side though), or my affinity for donuts and total lack of willpower.
It’s much easier to make a list of what not to do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines:
1. Don’t go up to strangers and ask them personal questions about their appearance.
It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.”
2. If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better.
3. It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little.
I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure Scleroderma.” When I go swimming, I always wear a Scleroderma Walk tee shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to:
- Raise awareness for scleroderma.
- Conceal my purple and red spots.
- Allow people who meet me to immediately know what I have and go home and Google it if they so desire.
In the last 30 years, I have had surprisingly few people directly ask me about my appearance. I’ve heard a lot of whispering and know many people who’ve asked mutual friends about my disease. For the first ten years of my teaching career, I can count on one hand how many colleagues and students asked me about my appearance. Children and adults are trained not to ask such questions for fear of being rude or hurting someone’s feelings. I always feel kids staring at me a little too long when they first see me in the school hallways, but few ever question me directly. When I taught fourth grade, I became very close with my students each year. I shared all kinds of funny personal stories with them, but never did I once have a conversation about scleroderma. The craziest thing is I taught a science unit on skin! We did experiments with our fingerprints and discussed the function of skin at length. I had to use students’ hands to model concepts like skin elasticity and opposable thumbs because I could not use my own. This all seems so ridiculous now.
So, how do I want someone to approach me? I can think of no better way than to describe an interaction I had with a third grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction:
3rd Grader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny?
Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look a little different right? So here’s the deal, I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense?
3rd Grader: Yes. Does it hurt?
Me: Sometimes, but I’m really used to it so it doesn’t bother me so much.
3rd Grader: Oh. Like I said, you are really really beautiful, Mrs. H.
Mind blown! This 3rd grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection:
1. He waited several weeks and got to know me before asking me a personal question.
2. He expressed interest in my well-being.
3. He sandwiched his question between compliments.
Disclaimers:
- In this post I reflect on how ridiculous it was that I taught an entire science unit on skin without ever discussing my skin disease with my fourth graders. I falsely infer that I now handle this situation differently and seize teachable moments to discuss scleroderma with my students. I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us. I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.
Comfortable In My Thick Skin 
I LOVE your idea of having an age-appropriate conversation with your school’s students. It will educate and enlighten them about this disease, and will hopefully lead them to understand (if they don’t already) that while some people look different from one another, we are all members of the human race and we all share the same emotions. Go for it! I know you would give an unforgettable presentation.
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Thanks! Your encouraging words are making me feel braver!
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As an artist, I have the “right” to be a little nutty, so at the beginning of each school year after playing my name memory game so that i could learn everyone’s name, I would announce to the the class that I was crazy and often it was really obvious. Of course they thought that I was kidding, but by Christmas, they believed me and that made the rest of the year easier. I started each day with with silly jokes and and occasionally did silly things to keep their attention, especially during social studies, which I love and they seem to hate.
I found when my husband passed away, it was easier to talk to the whole class and try to answer their questions so that they understood how I felt or suddenly had tears in my eyes. It worked because children are much more understanding than adults, especially special education students.
As you pointed out, it is best to be honest with kids. Adults on the other hand ask questions that often seem inappropriate. I find changing the topic works quite well. Maybe you should carry little cards that say, “I have. scleroderma. Google it!”It might make them think the next time they want to ask a question that is awkward or inappropriate
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You know my younger son who had severe asthma and was frequently hospitalized. When he was entering the junior high, the social worker and I thought it would be a great idea to meet with the entire staff for 15-20 minutes on the first day of staff meetings. Why the entire staff? Because my son might be in the hall or in the lunchroom when an attack came, and these other teachers and staff members knew who he was, but not what to do if an attack happened. Everyone wanted to be there, much to my surprise! The meeting went on for 1-1/2 hours with great questions and genuine interest. The teachers, in turn, were able to answer many of the children’s questions about my son and asthma. The students, in turn, never teased him about having asthma, especially after some of them saw him during his earliest attacks at school.
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