9 Things People With a Rare Disease Are Tired of Hearing

People with rare diseases already face a lot of unique challenges — so fielding daily questions from complete strangers can be especially exhausting. We know curious passersby (and even loved ones) often mean well, but we wanted to sort out a few questions that may be better left unasked.

The Mighty teamed up with Global Genes, a disease patient advocacy non-profit organization, to ask people affected by rare disease what they’re tired of hearing from strangers.

Here’s what they had to say:

1. “Can it be outgrown?”

“My son has osteogenesis imperfecta (a.k.a. brittle bones disease). People ask, ‘Will he grow out of it when he’s older?’ all the time. My reply is always, ‘No, but hopefully they will find a cure someday. He’s a happy boy in spite of it.’ What I hate most is the sadness and pity on their faces and in their replies. Sure, it sucks, but my son is happy, and we have a wonderful life.” — Crystal Leigh Knippa

2. “Think positive thoughts.”

“First of all, that makes me feel as though if I show my true emotions, I’m looked down on, and secondly, it feels like I have to fake how I’m truly feeling. It also bothers me that people don’t understand the grieving that goes along with losing the life I once had and the dreams I once held… I’m tired of trying to explain to people who truly don’t get it.” — Cynthia Taberner

3. “Will I catch it from you?”

“They ask, ‘Is it contagious?’ as they back away from me. No, it’s not.” — Aimee Burnett Caldwell

4. “Did you do something to cause this?”

“‘So you must have drank a lot of alcohol to get autoimmune hepatitis (AIH).’ Uh, no. It’s my body attacking my liver.” — Aimee Burnett Caldwell

5. “There’s bound to be a cure; you just have to keep praying.”

“My son has an incurable rare disease which is life-limiting… I don’t think praying will fund research.” — Geraldine Renton

6. “I have that too.”

“I get tired when someone tries to ‘one up’ me. Just a few weeks ago, a woman tried to tell me how she knew exactly how I felt because she had the same exact diagnoses, but ’10 times worse.’ I smiled and politely informed her that my doctors would love to talk to her doctors since there are only three others in the U.S. with my same constellation of rare diseases. She was pretty quiet after that.” — Missie Crisp

7. “You use your illness as an excuse for your weight.”

“[They say this] without knowing anything about it or the medications I take.” — Cynthia Rhodes Alberson

8. “At least it’s not cancer.” 

“I’ve heard that one a lot.” — Cynthia Rhodes Alberson

9. “You don’t look sick.”

“Most people really do mean well but some of these comments and questions hurt to answer over and over again… Yes, lots of people don’t look sick. By the way, what does ‘sick’ look like? — Danielle Myers

If you or a loved one lives with a rare disease, what’s one thing you’re tired of hearing? What would you rather hear instead? Let us know in the comments below!

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