What Does It Mean to Be 'Rare'? You Told Us.


We asked our rare disease community this question: What does it mean to be “rare”?

Their answers are heartfelt, eye-opening and important, and will hopefully inspire others to be more compassionate when a loved one or even an acquaintance explains a diagnosis.

Take a look:

1. “When you go to the hospital and the doctor goes, “OK, I’ll be back in a minute.” Fifteen minutes later. ‘I’m sorry had to talk to others doctors because I’ve never heard of it and I do not know how to treat you.’” — Joanna Ramsey

2. “Isolated… All you want is to share your experiences with others, but because it’s so rare, there aren’t many others.” — Samantha Sikorski Raynor

3. “It can make you feel as if you’re an outcast. Most people have no idea what 24/7 exhaustion or being in true pain really feels like. Lucky for them, they’ll never understand.” — Lexi Potter

Black umbrellas with one red umbrella and quote "It can make you feel like you're an outcast."

4. “It makes me feel like my struggles aren’t valid because I have to constantly explain what my disease is and how it affects me. There isn’t the same compassion and understanding with a rare disease as there is with some of the more well-known conditions.” — Amanda Baldassari

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5. “Having a rare disease is a hard thing to live with. It is a constant battle between the outer shell and core of you. It is debilitating physically, physiologically and emotionally. Everyone thinks if you look well on the outside, that must mean you’re OK! In our case, however, it is far from true. What they don’t realize is how hard it was for you go get out of bed in the morning, how hard it was to put pants on, how hard it was to make yourself breakfast and how hard it was to look at yourself in the mirror and put on a fake smile for the world. Many people are unaware of just how many illnesses there are, and they’re quick to blow off illnesses with long names, or names they’ve never heard.” — Tiff Paige Miller

6. “I feel so, so lonely.” — Vicky Wilson

7. “It sometimes makes you feel like others think you’re making it up because when I get asked about my conditions hardly anyone has heard of them — not even doctors sometimes. I always have to explain.” — Katrina Dyer-Davies

8. “To me, being ‘rare’ means frustration. If I need emergency treatment, I can’t just go to the emergency department like everybody else. They have no idea what to do for me and my specialist is 500 miles away. Imagine your house being on fire, and you call 911, and the fireman comes to you and says, ‘Oh, sorry, I’ve never seen a fire before and I can’t put it out for you.’ That is what being rare means to me.” — Kerri Symes

Fire with words "Imagine your house being on fire, and you call 911, and the fireman comes to you and says, 'Oh, sorry, I've never seen a fire before and I can't put it out for you.' That is what being rare means to me."

9. “When you have a rare disease like I do (babesia), the doctors at the hospital have only read about it in the New England Journal of Medicine. They’ve never met anyone with it, they don’t know how to pronounce it or spell it, let alone treat it.” — Chronic Beauty

10.It means doctors dismissing you because they can’t figure out how to help you. It means doctors Googling your condition while you’re in their office. But it also means that when you find others with the same condition, you can empathize with everything they are going through.” — Sasha Nelson

11. “Having a rare form of a non-rare disease is weird. Really, really weird.” — Ellie Jean B

12.It’s trying to find a balance between knowing my condition (mast cell disease) and body better than the doctors I’m going to see, but still needing their input because they know the medicine. It’s trying to reach that mutual understanding that they know the science but only get a snapshot of our daily lives, and we know our bodies better than they ever will.” — Kylene Boka

13. “To me, rare means not having treatments to help you live a ‘typical’ life.” — Alicia Estadt

14. “You feel constantly dismissed. Doctors do not know how to treat or diagnose you. Friends think you are faking it. Everyone you know is a ‘doctor’ and tells you what you should do to be cured.” — Hanna Danielle Stutts

15. “I feel lucky. Lucky to be able to share my experiences with others who are struggling with rarity and uniqueness. I’m also lucky to have such rare and interesting people in my corner as well!” — Lindsay Livingston

16. “I feel like I am carrying the weight of the world on my shoulders every single day. Between advocating on behalf of myself and my kids, providing ‘continuing educating’ for providers in the medical field who are unaware of our conditions, playing secretary/concierge trying to get all the appointments scheduled and calling specialists on a consistent basis to see if there have been any cancelations or remembering to request refills and/or authorizations for prescriptions, and being a patient, it can be too much to handle. It feels like quicksand, but I have to keep fighting because who else will?” — Christy Sumner Rue

sand with words "It feels like quicksand but I have to keep fighting because who else will?"

17. “It makes me feel like a freak show.” — Rebecca Walz

18. “It usually feels itchy, painful, sometimes scary and sometimes isolating. And others can make me feel unheard, doubted and judged. But on days like today I’m reminded how far I’ve come since finding a doctor who listens, cares and works hard to help me feel better, and friends who can relate. I don’t feel so weird or alone! I feel grateful.” — Sean-Michael Gettys

19. “It makes me feel like a guinea pig or a science experiment since being rare equals less funding for treatment.” — Christina Schulz

20. “It makes me feel like a broken record. I’m constantly having to repeat my entire medical history to people (let’s give it a low estimate…) about eight times per doctor’s appointment.” — Katie Taafe

broken record with word "It makes me feel like a broken record."

21. “It feels like you’ll never get the help you’re so desperately seeking because nobody seems to understand and there’s usually no cure and little treatment.” — Shana Romancheck

22. “It can be lonely and isolating to have a rare disease. Using social media to connect to people in a similar situation all over the world helps.” — Jason Heather Tanner

23. “It makes you incredibly self-conscious. It allows people to discredit you and judge you. Then on the other hand it thickens your skin and really builds your strength.” — Ali Mygrants

24. “Certain government services try to pretend I don’t exist. I don’t fit into their categories, so either I’m lying, I’m deluded or I don’t deserve their help.” — Felicity Smith

25. “It is not nice being one in a million. It is not special. It is frustrating, depressing and extremely tiring. And I have yet to meet someone nearby who truly understands. No, it’s not special being one in a million; it’s lonely.” — Karen Taylor

white chairs with one red chair and words "It is not nice being one in a million."

26. “The stigma and ignorance I encounter on a regular basis is exhausting.” — Syrena Clark

27. “Doctors don’t believe I’m in pain, and friends think I’m a hypochondriac.” — Calliope Krystal Pia Kilplainen

28. “I have to pretend to be someone I’m not or I won’t have have anything in common with anyone.” — Malin Cronborn

29. “Being rare means I’m usually a guinea pig for doctors, procedures, treatments and medications. It means knowing that most of the time, the things we try to stop the progression of my disease won’t work. But it also means fighting for a life in spite of that knowledge. Being rare also gives us the unusual opportunity to educate people around us in hopes that, one day, we won’t be quite so unheard of anymore.” — Christina Ebersohl

One bird flies away from the flock with words "Being rare also gives us the unusual opportunity to educate people around us in hopes that, one day, we won't be quite so unheard of anymore."

Do you have a rare condition? What does being “rare’ mean to you? Let us know in the comments below.

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