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5 Things to Remember If You're Trying to Explain Your Rare Disease


Do you think explaining your rare illness to someone new can cause you more anxiety and flares? Dealing with any chronic illness can be anxiety-inducing and isolating when others don’t understand. It is very discouraging when we can no longer live a “normal” life, but we “look normal” to the world. It becomes even harder when the people we are closest to seem to disregard the pain and symptoms we’re experiencing.

Over the past eight years, I have learned a lot of different ways to help explain my different diagnoses and what I go through, often on a daily basis.

1. Accept that not everyone you meet will understand or want to understand. This was the hardest thing to come to terms with. I figured the more I shared to the people close to me, the more others would start to understand. Unfortunately, I quickly learned that although some people will start to begin to see what we mean, not everyone will choose to learn enough to comprehend our daily struggles.

2. Use the “Spoon Theory” when possible. The “Spoon Theory” is the most well-known response to “You are too young to be sick.”

3. Try not to complain. There is a fine line between sharing information and complaining about your situation. Spending too much time complaining about the current situation will not be beneficial for getting others to take us seriously. People may have listening ears, but over time, this will become too much for them and they will brush you off.

4. Make up creative analogies. I’ve been telling people my body is like a broken down car. If one of my tires is blown, I can’t exactly go to the car wash. This means I can’t leave the house or even work an 8-hour job.

5. Provide more information for those who want to know more. If you are talking to someone who is interested in knowing more, this is a great opportunity to provide them with additional resources. I send them links to my favorite sites and send them graphics that help explain things better. I have a list that I saved to with people are interested.

Please know that you are not alone on this journey with your chronic or rare illness. While we all have different conditions, pain, and symptoms we are all here for each other.