366 Talking Tips – People, Life, Rare Disease Community

Ever feel like you have 1,097,652,876,821 things to acknowledge and take care of and literally none of those things are something you actually want to do? Well let’s take a huge step back. I know life can be daunting, I know life and confusing and lonely, but what what is this organic spaceship we call home other than one big village.

We think we do things for ourselves, but in reality, we do things to make life easier for our interconnected community. Think about it, from the first words you ever spoke to the last college class you took all the way to the last corporate retreat you took part in… ALL OF IT, has been to prepare you to make life easier for not only you but everyone else who surrounds you.

As a rare disease patient, this example also holds true. You speak to your doctors, get treatment, suffer through side effects to #1, make yourself able to manage your rare disease, #2 help your family support you and stand behind you and #3 (sometimes more subtle than it actually is), create awareness and further research that will help others who may be diagnosed with your same rare disease.

Think about that next time you think you’re being selfish in taking a personal day and unwind or catch up on some you time… But don’t forget, most of the things you do are to make all of our lives a little easier, even you taking some you time. 😉


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