Thursday, April 14, 2016

Thank You to Those Who Cared

Dear Healthcare Provider,

I know this may be a bit jumbled, but please bear with me.

I just want to say thank you.

If I've seen you for any length of time, I'm sure you know by now that I'm never short of ridiculous stories of bad doctors and what happens to a professional patient living with a rare disease. And while the stories can produce a laugh after the fact, in the moment these experiences have been so draining, frustrating, and downright awful.

But that's not why I'm writing this. Instead, I'm writing to you who believed in me. I know I'm more complex than your typical patient. I know that my body does not play by the rules and likes to throw curve balls. I know that taking me on as a patient means extra work on your part.

I'm sorry it has to be that way...but thank you.

I wish I could express in words what it means to have you believe me. I know there is no way to adequately express my appreciation of your being willing to put in the work to manage my care and be an advocate for me to other providers.

How do I thank you for believing something was actually wrong with my GI tract when so many were convinced I was just starving myself?

How do I thank you for being my nurse and for being willing to take my side against doctors who wouldn't listen and doing your best to keep me safe while in the hospital?

How do I thank you for refusing to give up searching for answers and not telling me "it's all in your head" even when test after test came back "normal?"

How do I thank you for not being willing to accept my loss of coordination and balance as permanent and designing a physical therapy program to focus on helping me regain what I had lost?

How do I thank you for taking the time to learn about mast cell disease just so you can provide the best possible care for me even though it means extra work for you?

Sometimes words just don't do justice to the gratitude I have for you who refused to give up on me. I wish I could better express how much you truly mean to me. I may not even see you anymore as my provider, but know that your piece in the complex puzzle of my healthcare is not forgotten. There are times that the English language (or any language for that matter) just can't fully communicate what I want to say. So for an incredible lack of a better phrase:

THANK YOU!

I mean that from the bottom of my heart. There are just no words. There is just no way to adequately thank you for the impact you had on my life.

Kylene

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