1. Get educated. Just about every disease has its own advocacy organization. That is a good place to start when looking for information about what it means to have a particular disease. An estimated 300 million people in the world are living with 6,000 rare diseases. There’s a lot to learn.
2. Ask questions gently. Dealing with illness has been a long road for many rare disease patients. Some spent years just trying to get a diagnosis. You can ask questions, but ask gently. Some people prefer not to discuss their health (because it’s not their favorite topic). Others would be happy to have a willing listener. Which sort is your friend? You can find out by asking.
3. Be considerate. You might offer to lend a hand or run an errand for an overwhelmed friend, but know that some people don’t want any special treatment. But just about everyone will be happy if you mind your germs. One patient told us she appreciates when friends protect her from illness by staying away when they are sick.
4. Be understanding about canceled plans. Someone with a rare disease might cancel plans more often than he or she would like to. This is disappointing for everyone. Being understanding about it can be a real gift. Why? Because then your friend doesn’t have to deal with the sadness of missing something fun and the guilt of disappointing other people. Try not to say: "But you don't look sick." It's a pet peeve of patients who have "invisible" illnesses.
5. Show up. Your friend might feel alone or overwhelmed with worries sometimes. Show up in the ways your friend likes best. It could be attending a fundraising walk together to support research. Or it could be something simple like hanging out and watching a movie that makes you laugh. Overcome the obstacles and let your friendship roll on!
