Lessons for Rare Disease Advocates from Game of Thrones
May 22, 2019
When Game of Thrones concluded on Sunday, I was happy to see Tyrion Lannister had survived the ordeal. He outlasted white walkers, a murderous sister, a sadistic nephew, vindictive women, and even the field of battle, all with his wry and self-deprecating sense of humor intact.
Tyrion placed a rare condition before millions of viewers for eight seasons. In a show with as high a body count as any I can remember, he was a triumph of brains over brawn.
As the public has taken to social media to debate the final episode of the series, it’s worth pausing for a moment to contemplate the many lessons for rare disease advocates the show offers. There is much wisdom to be gleaned from the long running drama, not the least of which being if you are battling armies with swords, it’s good to have dragons.
One word of advice which press reports indicate not everyone followed: Watch all eight seasons before naming children after any of the characters as your favorite heroine may turn about to be a homicidal maniac consumed with madness (spoiler alert).
Here are a few thoughts for rare advocates to consider:
“Never forget what you are. The rest of the world will not. Wear it like an armor, and it can never be used to hurt you.” –Tyrion Lannister
Tyrion delivered this bit of wisdom to Jon Snow during the show’s first episode. Snow, like Tyrion, shares a certain ostracism because of his status in life as a bastard. For Tyrion, it is his dwarfism. It is worthwhile advice that people need not be embarrassed by the biological circumstances of their birth and they should own, rather than shrink, from whatever condition they may have.
“No one can survive in this world without help. No one.” – Jorah Mormont
Jorah Mormont, a fallen lord who becomes an advisor and protector to Daenerys, offers this bit of advice to her early on. Even though Daenerys turns out to be quite the badass, rare disease patients and advocates may feel independence is essential and that asking for help makes them appear weak or inexperienced. There’s no shame in asking for help when you need it. The worst thing that will happen is someone will refuse you.
“The occasional kindness will spare you all sorts of trouble down the road.” – Cersei Lannister
Cersei may be one of the last people to look to for advice, but here she was offering a bit of motherly wisdom to her son Joffrey. Getting Sansa a nice piece of jewelry would have been a much better way to woo the daughter of the north than cutting off her father’s head, but kids don’t listen. They have to learn the hard way. Rare disease advocates will find their relationships with advocates, academics, and industry can be smoother when they act with respect and kindness. It’s the right thing to do and can pay dividends in unexpected ways in the future.
“When the snows fall and the white winds blow, the lone wolf dies but the pack survives.” – Ned Stark
The lord of Winterfell said it with a little poetry, but in simple terms for rare disease advocates: collaboration is critical. Tackling rare diseases requires an exhaustive effort. People have different talents, abilities, and knowledge. There is also much shared need that can be addressed more quickly and economically when people work together to tackle problems.
“There is only one thing we say to death: Not today.” – Syrio Forel
I leave the final lesson to the words of the master swordsman Syrio Forel, who was enlisted to train Arya Stark. In the rare disease world these words can carry both figurative and literal meaning. Don’t give up.
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