Trying to explain to people what it is and how it effects you differently everyday. You can be fine and able one day, then 💥 disabled and can't walk the next. It's a very unpredictable disease that more people need to learn about.

My best friends all researched the condition and try to understand it as much as they can. My family on the other hand, have no understanding of the disease at all. It was only my family that knew for 1st 3 years of my diagnosis which made things very lonely, difficult and isolating. I should have told my friends sooner.