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10 things we need to learn from rare diseases
- Everyone thinks they are immune;
The truth is, it can happen to anyone. It’s just life. - Happiness is in the little things;
Enjoy every step you take, every sigh, every sip of water, every hug, every smile. The little moments are the ones that have the most meaning. - There is no right way to deal with all this;
Nobody gets a survival manual. The initial blow hurts more for some than for others, and everyone reacts in their own time. There is no right and wrong. - You don’t have time to be afraid;
Decisions need to be made. Aggressive treatment, emergency surgery, life support interventions… Quick choice. It’s really scared. We’ll find a way later. - It’s not the end of the world;
It’s hard, it’s painful, but it’s also pure learning. Today you are stronger, braver, more determined and more organized than your old self. - Sometimes people are more difficult to deal with than the illness itself;
Insensitive comments, inconvenient hunches, prejudice, judgment and social exclusion. People can be as cruel as an illness. - Don’t hide, share your story;
It’s not about drama, nor about drawing attention to yourself. It’s about helping people, sharing learnings, fighting for the rights and visibility of a much larger group. - You can’t fix everything;
There are things that can’t be fixed, and that’s fine. Stop trying to carry the world on your back, it’s not worth it. - No one loses the battle against an illness;
Stop saying someone lost the battle with the disease. No one chooses to be sick, but everyone who has faced an illness has done their best. Choosing to fight, regardless of the outcome, is not a defeat. - Diagnosis is not an end, it is a new beginning;
Even if you have little time. Some new beginnings are more difficult than others, but from them we learn to see life with new eyes.