Jessie Parks is a writer for the Charleston City Paper. Her words are absolutely beautiful to behold.
The reason she started her column? Her mother. who was diagnosed with Waldenstrom macroglobulinemia in 2015.
As Jessie explains, the news changed Jessie in many ways–her outlook on life, her understanding of its fragility, and her desire to delve more deeply into the relationships she builds with her readers.
After the news of the diagnosis, she was approached again and again by people who said they understood, that they knew what she was going through.
“I get it.”
“Don’t worry so much.”
“It’ll all work out.”
“There’s no use worrying when there’s nothing you can do to change the situation.”
They’re phrases we’ve all heard again. And again. And again. They’re meant to be helpful. In actuality, they can often make us feel more isolated.
The fact of the matter is: there are very few people who understand.
There are very few people who get what we’re going through. Yes, there may be similarities, but very few understand the immense technicalities of what we’re experiencing. So to be told not to worry by someone who can’t fathom the scope of our concern can be frustrating and disheartening.
Jessie says that after experiencing this first hand, she’s tried to translate what she’s learned to her daily life and simultaneously transmit it to her column.
The basis is this: share your story and listen to others. Realize the two won’t be the same. Have empathy. Realize that you may not understand. Provide support, but not necessarily guidance. Understand that everyone has a different tale to tell.
For rare diseases, in particular, we’d like to add that regardless of how few have dealt with what you’re going through, there may be more similarities between individuals in this community than you realize. Reach out, tell your tale, and know that whatever you’re feeling is valid.