GREENSBORO, N.C. — Looking for ways to support someone with a rare disease? Here are a few ways to be an ally and show support for a person battling a rare and chronic disease.
Show support by choosing your words carefully, by not saying things like, “try to stay positive,” “be grateful for what you have,” or “look on the bright side.”
According to CSL Behring Biotherapies for Life, suggestions like the ones above are called “toxic positivity,” and it’s not productive to suggest someone simply change their outlook when faced with a rare disease.
Family members and friends who want to offer support can do so by offering help with basic chores like house cleaning, grocery shopping and running errands.
Experts recommend listening to the family member or friend with the rare disease to see where you can jump in to help instead of simply saying “what can I do to help?"
Finding reliable resources and doing your research on the rare disease your family member or friend has may also serve as a benefit and help and special way to support them.
Health experts also recommend getting educated about rare diseases or the rare disease your loved one is faced with, asking questions gently, being considerate, being understanding about canceled plans, showing up in ways your family or friends like best, and truly listening.
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