Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some really remarkable people—hearing what health literacy is, why it matters and ways all of us can help improve health understanding.
Today I’m talking with Becky Curran, who was born an achondroplastic dwarf. Becky is passionate about finding a way to change how people with disabilities, including little people, are perceived in the media.
Becky is committed to helping everyone accept differences in others. Becky and I are both members of the National Speakers Association, and we recently spoke about how people’s differences can affect health communication.
Becky has such an important message to share that I invited her to be a guest on Health Literacy Out Loud. Welcome.
Becky: Hello. I’m happy to be here.
Helen: Becky, you and I were talking about when we go to the doctor. It’s an everyday conversation. We all go to the doctor, but you were saying that sometimes when you go it seems extra uncomfortable and providers perhaps seem startled or don’t know what to do when you’re the patient.
Please put this into context for us. What’s the problem if you perhaps are unlike other patients that the doctor has treated?
Becky: That’s a great question. If I were to just pick a doctor in my network in the area where I live, most likely they will have never cared for a little person before. “Caring for” refers to having them in their office and giving them recommendations on health concerns.
Helen: You’re just showing up for a sore throat or an ear infection just like everybody else, right?
Helen: You’re not talking about something specific to your condition. It’s just a general health problem.
Becky: Exactly. I just went to my sister’s doctor. I’m an achondroplastic dwarf and my sister is average height, so she did not have the complications that I had when it came to finding a doctor.
Of course, your average family wants to go to the same pediatrician for both children. We had to get some information and make sure that the pediatrician that me and my sister went to growing up was understanding of the fact that it wasn’t going to be a checkup with just the normal things to look out for as a child.
He also had to check to see if there were concerns based on my growth. We had to monitor head size because my head runs a little bit bigger than your average head. We had to make sure there wasn’t fluid because if there was I would have had to get a shunt. I also had to be in a brace while growing up.
He really didn’t know how to look out for all of these things and we had to make sure we had a backup. By the time I was six months old, we did have a backup doctor who was a specialist in Baltimore that we went to at least once a year.
We didn’t want to stop going to the pediatrician, especially when it came to going to the doctor for a cold or something that didn’t make sense to drive all the way to Baltimore for.
Helen: You’re not from Baltimore.
Becky: Being from Boston, that was an eight-hour drive. We really hoped that it was only once or twice a year maximum because it can get expensive as well.
Helen: You’re seeing a specialist who knows a lot about your situation and working with people similar to you. What’s it like either as a child or adult when you do have that cold, just need a checkup or all that stuff we deal with all of the time?
Becky: When you go to the doctor, even if it’s just for a cold, sometimes they like to take your vitals and they weigh you. This became a big concern when I went to the pediatrician because he kept telling me that I was underweight. He was basing my weight on people my age rather than people my height.
Helen: Can you share for listeners about your height just so they get a sense of who you are?
Becky: I’m 4-foot-1. An average person around my age was at least over 5 feet. The doctor was having concerns. He was asking if I was eating enough cheese or protein or if I just wasn’t eating enough.
Around the same time, my doctor in Baltimore kept telling me “You need to lose weight. You’re way overweight,” and it became conflicting.
Helen: You’re in that situation, as people with other conditions are, where perhaps you are unlike other patients that that provider has treated before. I’ve written a lot about some rare diseases. For those diseases, sometimes it’s up to the patients and family members to actually educate the doctor or other providers. Is that the situation that you feel like you’re in sometimes?
Helen: Do you have to be the one to say, “Wait. I’m not underweight. Actually, I’m the okay weight,” or whatever you say?
Becky: Exactly. I was overweight, and I continue to struggle. I need to focus on having smaller portions and pretty much eat as much as a child should eat because I’m around their height.
Helen: Becky, you know that my focus is on health literacy. That’s what this podcast is about and that’s what are listeners are concerned about. From your perspective, how we can all help improve health communication when we’re talking with someone unlike others we’ve spoken with before?
Becky: It’s important to be open to learning from the health professional side and don’t try to understand or know all of the answers. You can always refer someone to someone who you think may have the answers.
It’s better for someone to say “I don’t know” than to just make something up. That can make the patient more upset and more uncomfortable, and that begins to break the level of trust that they may have initially had.
Helen: Is it better that someone would say, “Can you tell me more about your health history or what it’s like for you?” rather than just assuming you’re like everybody else.
Becky: A great example was recently when I was going to get a yearly exam at my doctor that I found. He was recommended by the pediatrician I had growing up. Even that process was really difficult as I had moved back from California.
In California, I had a doctor who other little people had gone to before. He wasn’t a specialist, but he at least had met and seen little people. That made me feel comfortable because he wasn’t afraid to ask questions and he didn’t act uncomfortable.
Then I came to a doctor here and just wanted to get my yearly checkup. It wasn’t easy just trying to find any doctor. We went through the recommendation of my pediatrician growing up and this doctor ended up being really nice. He had me go through all of the blood tests and everything that your average patient at the age of 30 would go through.
Then he asked me, “Do you require any extra blood tests? Do you require any things to pay extra attention to? I know that I don’t know much about dwarfism, but I’m going to try to learn and do my research.”
That’s all we really ask because it’s hard since there are only 30,000 little people in the United States. There aren’t going to be doctors who want to specialize. All around the country, there are only a certain few who are really going to make that their career.
Helen: That really interesting. You really appreciated him saying, “I don’t know that much. Tell me more.”
What about your job as the patient? All of us when we’re not feeling well may think, “I have to do one more thing.” Is there more that you need to be doing to be your own advocate?
Becky: As I was saying earlier, weight has always been a big thing. I need to make sure that I stay fit because anything that could become a complication could be related to that. I need to question them if I feel that something doesn’t seem right when they try to diagnose some certain condition.
In most cases, right now as a 30-year-old I’m going to have the same health issues as anyone else. There really wouldn’t be extra complications related to dwarfism, unless it’s related to my back. I did have seven pieces of my lower vertebrae removed at 15.
There are open pieces where the vertebrae were taken out and I just have to make sure I’m very careful with my lower back. Luckily I don’t have any pain, but I just have to be aware of my own body. If something starts to hurt, I have to get it checked and make sure that it doesn’t become an elevated problem.
Helen: In all health communication when we’re dealing with a clinical situation, we both need to respect each other, listen and get the other person’s point of view. It sounds like that’s what you need to do, but you’re even more acutely aware of that all of the time.
Helen: Becky, a lot of our listeners perhaps are not clinicians, but they might be writing information or putting it on the website. I know that your focus is on including everybody and appreciating our differences. What advice and recommendations do you have when we do print and web materials?
Becky: It’s important to use the right terminology. Even as you were introducing me, we made sure that achondroplasia was pronounced and said correctly.
Helen: Yes, I did check that out with you.
Becky: Exactly. It’s important to make sure you try very hard to use the appropriate terminology because that will allow you to sound more credible and we’ll be able to trust that you did research on your information.
We do have a Little People of America website. It’s www.LPAOnline.org. It has a great page with facts about medical terminology and a lot of reports with history of the little people population and medical conditions.
Helen: Becky, there’s the term little people. Can I safely assume that because that language is fine with you that therefore it would be fine with somebody else in the same situation?
Becky: It’s a fine line. I don’t mind it, but I would use the principle that I recommend everyone use. That’s to ask questions rather than make assumptions. If I’m comfortable with it, someone else may not be.
If you’re hesitating in any way, call someone by their name and then work on the terminology with them after the fact because we’re a person before anything else.
Especially in the health profession, you want to dig deeper because you’re going to need to learn about their condition. Ask them. Start to have that conversation. Ask their name. Then ask them their concerns, what you can do to help, and how you can start a great relationship where you’re both very open with communication and you’re be able to address any concerns at any time.
Helen: Thank you. You talked about the people part even in print. I’m a champion of this. I’ve heard from many people about people-first language. It’s all the characteristics of who we are after we acknowledge that we’re all people.
What about images if we’re dealing with print or the web? Certainly we can’t be inclusive of everybody and what everybody looks like. Do you have any recommendations for what we should consider to appreciate everybody’s differences?
Becky: Achondroplasia is the most common among the 200 different types of dwarfism. If you were to use a picture of a little person, that one may be one that people could relate to the most.
Helen: I want to broaden the question. You said there only 30,000 people nationwide with that diagnosis. If we are just writing something about the latest flu or something having nothing to do with your specific condition, how can we include images so that people can feel like, “That means me too”?
Becky: It depends on the community around you, where you work and where you live. Monitor your day-to-day life and the people in your community because most likely those will be the people who come to your practice.
What we always try to do and what I always encourage in my work is let’s try to accurately portray the American scene. If you see a lot of people who are in wheelchairs or if they are of a certain ethnicity, it would be great to accurately portray the patients who come in.
Maybe even take survey of patients you’ve had in the past up and make those pamphlets diverse. Make it so these people can have someone to relate to, especially children. They love to know that they’re not alone and that they can relate to someone in that pamphlet who may have a similar condition.
Helen: Thank you for that, and thank you for championing that message of helping everyone accept the differences in others. We’re all different, we’re all special and we’re all people. Even more, Becky, thank you so much for being a guest on Health Literacy Out Loud.
Becky: Thank you for having me. It was a pleasure. I always love educating people. Hopefully this helps people just keep learning.
Helen: Thank you, Becky.
I learned so much from Becky Curran about how to accept differences in others and how to communicate health regardless of who we are. But lessons like this in health literacy aren’t always easy.
For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you’re there, sign up for the free monthly enewsletter, What’s New in Health Literacy Consulting.
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Did you like this podcast? Even more did you learn something new? If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.