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Misconceptions about living with a rare disease – the community weighs in

Misconceptions about living with a rare disease – the community weighs in

Posted by Laura Mullen

A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.

On World Rare Disease Day, groups and communities representing over 7,000 rare diseases gather together to unify their messages and support one another. With so many conditions, and new ones continuously being discovered, it’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare.
The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, there are many who think it’s a much easier path than it is. The struggle to receive access to treatment and care, as well as a knowledgeable medical team is very real.
Here’s what they had to say:
  1. “One misconception about rare disease is that people think doctors and researchers are lining up to study you, do research and help you – and that doctors will know what to do with you. Nope, nope, and nope. There are no adult outcomes, longevity, or lifespan knowledge for my children’s disorder. We are literally figuring it out as we go along.” – Lindsey C.
  2. “When people say, ‘I hope she gets better or I hope she gets healed.” I know it’s very well-meaning, but when you have a genetic disorder, every cell in your body contains your mutation, so that’s just simply not possible. I just smile now; I’ve stopped trying to explain.” – Kristy L.
  3. “Some people think that people living with rare diseases have no value, and that we aren’t worth curing.” – Julianna K.
  4. “One misconception is that if I don’t make it to a doctor’s appointment, I’m not really sick. Sometimes the symptoms of my rare disease prevent me from making it to the doctor.” – Heather S.
  5. “Treatments are not the equivalent to being cured. It is frankly just treatment. I am still fighting. I am still sick. I will need ongoing treatment forever to live as stable a life as possible.” – Mandy F.
  6. “There is a misconception that having a rare disease gets easier the longer you have it. In reality, you get more fatigued and behind with your life.” – Patricia C.
  7. “Some believe that those who share the same rare disease can be treated the same, but that isn’t the case. What works for one doesn’t work for everyone.” – Angie G.
  8. “People that don’t have to live day-to-day with multiple, rare, chronic and degenerative diseases like I do don’t understand that it’s a full-time job, even though I am unable to work. It’s a constant battle juggling multiple doctor’s appointments and trying to keep my symptoms under control. So unless they’ve never walked in my shoes, they have no place to judge me.” – Amelia C.
  9. “It seems to me that folks assume rare diseases are ‘covered’ by insurance like any other condition. They are surprised to discover that the medicines I need — the treatments, even the doctors, are as rare as hens’ teeth and six times as expensive.” – Carolle C.
  10. “That we don’t have good days where we can pretend to be like everyone else. Just because we are in pain doesn’t mean we don’t enjoy going out with friends, shopping, or being social.” – AnneMarie G.
  11. “That the treatment for a much more common disease could also work on a rare disease, even if they only have one symptom in common, but completely different causes.” – Katherine O.
  12. “People think that if I’m smiling and seemingly happy, I’m not in pain. They assume I’m ‘all better.’ When in reality, I’m dying on the inside and just want to go back to bed.” – Ali K.
  13. “Some think that I should be better after all the doctor’s visits. It’s not easy to treat something that even your physicians don’t fully understand.” – Mindy A.
  14. “It’s a misconception that a diagnosis comes quickly.” – Karen R.
  15. “With a rare disease, it’s nearly impossible to get others to understand you’re in pain if you can’t show them.” – Christy H.
  16. “We aren’t on some kind of a stay-at-home vacation just because we have a debilitating rare condition.” – Tessie A.
  17. “Our society thinks it takes a special kind of person to care for someone with a rare disease or disability. Nope. It just takes a kind of person who displays basic human qualities and has a lot of love and patience.” – Elizabeth B.
  18. “You can live a joy filled life with a chronic illness. It doesn’t necessarily mean that you feel good, but that you choose to be joyful.” – Michelle P.
  19. “I’ve had people think that changing my food and/or diet will completely ‘cure’ my rare disease, which is not the case.” – Jenn S.
  20. “There’s an assumption that all doctors know and learn about rare diseases. This is certainly not true.” – Sandra R.
  21. “It’s frustrating when people tell me, ‘But you look great!’ My response? ‘Thanks! You don’t see me on the days I look like my medical record.’” – Dawn D.
  22. “People need to understand that we oftentimes don’t outwardly look physically ill. We could be your neighbor, your nurse, your teacher. You walk past lots of rare disease patients every day and have no idea who they are based on appearance alone.” – Kaitti M.
  23. “I think a major misconception of rare disease is that a diagnosis is given from birth or sought after. This is not always the case. Some rare disease patients are born in perfect health and live years before they have a ‘trigger’ to their disease. Literally overnight, families will have to live with massive changes. They will now learn to live with severe disability and the medical maze of rare disease.” – Kim S.
  24. “Don’t think that we don’t love what we have. Having a rare disease comes with pluses and minuses, but I wouldn’t trade my life if given the choice. So many incredible people have come into my life due to my rare disease. The tough times I endured have made me a better person.” – Kendra G.
  25. “A misconception of living with rare disease is that all experiences are the same. Instead, those experiences of people living with rare disease are as diverse as the people who live with even the same rare disease. There may be similarities to symptoms and treatments, but pain, medications, therapies, appointments, lifestyles will differ depending on who is living with the rare disease. We are still a kaleidoscope of our race, nationality, ethnicity, gender, sexuality, age, class and ability. Telling our complete and unique stories is imperative to patient-centered medicine.” – Rebekah P.

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