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10 things your doctor didn't tell you about living with a rare disease

Updated: Oct 1, 2018

What I've discovered on my journey...



No one ever warned me...

  1. That living with a rare disease at time can be scary as crap!

  2. That outside of the physical burden, you endure a lot of emotional and mental turmoil.

  3. That you develop a heart for others who are also sick and suffering. You wouldn’t wish this on your worst enemy.

  4. That many patients feel invisible, judged, and angry because they feel misunderstood.

  5. That after receiving a diagnosis it can make you question our entire healthcare system and process.

  6. That patients live with these illnesses while living full lives with families, babies and jobs too.

  7. How there will be time where you wish you were never sick.

  8. How explaining your health conditions to others is like pulling teeth.

  9. How adult care and child care are totally different when it comes to patient care and practicality.

  10. Having a strong support system can be the difference of life and death.

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