First of all, talking about your lipedema is very personal. You alone decide whether you want to share your history with people outside of your family and friends, or not. But when you are willing to talk about your lipedema, it can be helpful to have some answers ready.
Frequently asked questions and how to address them
Q: What is lipedema?
A: Lipedema is a long-term disease causing a build-up of fatty tissue in both of my legs and less frequently the arms. You can see that my ankles and wrists are not affected. My body shape looks disproportionate – a narrow waist and larger hips and thighs. My legs and / or arms are often painful and feel tender to touch or uncomfortable. The term “lipedema” is misleading, as there is no fluid accumulation (also called ‘edema’) in my legs and / or arms. The cause for lipedema is still unknown.
Q: What is the difference between obesity and lipedema?
A: First, lipedema almost exclusively occurs in women. Many women with lipedema notice the first signs and symptoms during times of weight gain and hormonal changes, such as puberty, pregnancy, or menopause. Obesity and lipedema often occur together but are two different diseases. In contrast to lipedema, obesity affects any gender and is not related to a certain age group. It is also not limited to the legs and arms but affects the whole body. Obesity is not painful, however leads to severe health risks, such as heart disease or diabetes.
Q: Why do you wear compression garments?
A: Wearing compression garments is one of the most important things I do to manage my lipedema. The compression reduces the pain and discomfort in my legs and / or arms. I also wear them while exercising, which is another part of my lipedema treatment.
Q: How does lipedema affect your daily life?
Of course, there isn’t just one answer to this question. Everyone’s lipedema journey is different, and so everyone’s answer to this question is quite different. You might like to speak in purely practical terms about your compression garments or share more about the impact it has on your everyday life. How you answer probably also depends on who you are talking to, how much you want to share and how you feel that day.
How to deal with inappropriate or rude questions about your lipedema?
Maybe you’ve already been in such a situation: A stranger (or a person you don’t know very well) asks you questions about your lipedema that are too straightforward, catch you off guard, or are simply rude. There are several ways to approach such a situation. One option is to take a deep breath, calm down and give this person a simple and objective answer. Take this situation as a chance to educate someone who obviously is not aware of your disease.
However, in some situations, you might prefer to tell the other person that this is your personal matter and that you are unwilling to respond to someone you don’t or barely know. You have the right to decide how you want to approach such a situation!
Talking about lipedema also helps to raise awareness. If you are talking to people about your lipedema, encourage them to find out more and explore it for themselves using any of the resources listed below.
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Don’t sit around and go through this in silence. Share your story. Doing that was a real eye-opener for me
Claudia Lymphedema patient