We love getting questions from readers! We recently had a reader contact us and ask for tips on how to explain Charcot Foot to others. They expressed frustration that people rarely know what Charcot Foot is and even if they do know what it is they don’t seem to understand how it really impacts their every day life. As we read the email we could relate. Lack of knowledge about Charcot Foot is the main reason we started this website. This was a question we knew we could tackle!
Charcot Foot 101
We recommend starting with Charcot Foot 101 when explaining it to close friends and family. They probably have no idea what Charcot Foot is but it’s likely they want more information than your neighbor. In this situation we like to give a medical explanation and a personal explanation. Our medical explanation of Charcot Foot usually goes something like this:
“Charcot Foot is a serious condition, caused by peripheral neuropathy, which leads to the weakening of the bones, muscles and tendons of the feet. Charcot Foot can lead to deformity, disability and even amputation. Charcot Foot can’t be cured and I am likely to experience fractures in my feet and continued problems related to Charcot Foot throughout my life.”
Now, the above response really focuses on the medical aspect of Charcot Foot and what most people experience. It doesn’t give people a clear view of how it impacts you personally. We encourage you to give a more detailed explanation of your experience with Charcot Foot so people understand your situation a little better. It doesn’t have to be super lengthy if you aren’t comfortable with that but it can still give them a clearer view. Something like this would be completely appropriate:
“Because of Charcot Foot I’ve had one surgery on my foot and I have had to be non-weight bearing for five months. My arch has collapsed and I have a rocker-bottom foot which makes it very hard for me to balance so walking is challenging.”
This might also be a good time to give them some resources so they can understand Charcot Foot. You could refer them to our website where we have several articles about the stages of Charcot Foot, Charcot Foot Deformity and Charcot Foot Terminology. They can also find many journal articles and resources online. Jessie, even published a short E-book all about Charcot Foot, called I Miss My Shoes: Living with Charcot Foot.
Impact of Charcot Foot
Much of the frustration that we experience surrounding explaining Charcot Foot is clearly describing how it impacts our lives. Our family members or friends may think it is just a foot issue. They may have the false idea that after surgery we will be just fine. They may even think we are making a bigger deal out of it than necessary.
While this can be insensitive of them it is still our responsibility to be honest about the impact of Charcot Foot. With family members and friends we encourage open conversations about all the ways your life has been affected by this diagnosis. Explain the isolation you may be feeling, talk about the pain, describe the multiple doctors appointments and the frustration you feel about misdiagnosis or lack of treatment options. Charcot Foot can lead to depression and anxiety or exasperate those feelings, share how you are feeling openly and honestly. The only way people will ever understand is if we are honest about it.
If you don’t feel comfortable sharing your own experience or you want to help them understand how Charcot Foot varies between person feel free to share Jennifer, Jessie, Lindsay, Joe or Charlie’s stories with them.
Telling the neighbor lady
We all have the neighbor lady, the gentleman at the library, the paperboy, or some other kind but nosy person in our life who asks us questions. They may ask, “what happened to your foot,” or possibly, “what’s wrong with you”. In these instances we recommend only telling what you are comfortable with. It may be as brief as these responses:
“I have Charcot Foot, a condition that causes the bones in my feet to deteriorate and break.”
“I broke my foot.”
“I have a diabetic foot issue.”
“It’s none of your business and I don’t feel like discussing my medical history with you.”
Explaining Charcot Foot can be challenging but remember you are in control of the information you provide people. You can be in-depth with family and friends and you also have the right to provide no information. You can even change your mind based on how you are feeling the day you are asked. You are entitled to your feelings and allowed to tell people you don’t want to talk about it. You are also allowed to share pictures, tell surgery stories, or provide a ton of detail if you like. The ball is in your court.
Do you have questions about Charcot Foot? Contact us and we will try to answer them to the best of our ability or direct you towards a more appropriate resource.