By Stacey Philpot
Befriending those with rare and chronic illnesses is not for the faint of heart. Your job description - should you choose to accept it - will include: walking with us through the plentiful highs and lows, learning a new language (the language of our illness), grieving alongside of us, possibly purchasing a medical dictionary, no longer pretending it’s all OK, and last but not least, refusing to give up on us.
I should forewarn you that our friendship will require more work on your part than others, and you may receive less in return.
Will you be one of the few, the persevering, who look at us and see that we are worth it?
Last year, I was part of a new treatment that my doctor initiated. He was the only one in the nation using the medicine in this particular way and was seeing tremendous results. I was already traveling to Michigan on a monthly basis to see him (as he was a skilled specialist in high demand) for my monthly IVIG infusion for CVID, but this would mean traveling back and forth every 14 days. I was feeling a bit unnerved, not only about doing such a large amount of traveling on my own but about starting this new treatment with unpleasant side effects and no support. But I gave myself a pep talk in which I reminded myself that while many people lacked healthcare altogether, even more lacked supportive families who would make such superior care possible. How could I complain about doing it alone? And so, I didn’t complain. At least, not out loud, I didn’t. My first day in Michigan as I settled in and prepared for my regularly scheduled IVIG infusion the next day, I received a text from my best friend who lives in Birmingham, Alabama. Her plans for the week had changed. Did I want her to drive up and sit with me for the new treatment? I did.
My faithful friend drove 11 hours one way to come and sit with me for a seven- hour infusion in a tiny room at the hospital, where I went to the restroom every 12-1/2 minutes. (Hey, that was a lot of fluid for a girl with a misbehaving bladder!) My faithful friend asked insightful questions, bought Mexican food for lunch and talked to me about my favorite shows. The time passed so quickly. Somehow, I forgot I was supposed to be scared.
At no point that day did my faithful friend tell me I was a lot of trouble. (Although, let’s be clear, sick or not, I am a handful.)
At no point that day did my faithful friend compare my rare, debilitating illness to a flu she had once. Instead, she sought to deepen her understanding.
At no point that day did my faithful friend tell me, “Things could always be worse.” Yes, things could be worse. But isn’t everyone’s hell hot?
While it’s always possible that my faithful friend is next in line to be sainted, I’d like to believe that she sees that I am worth it. I’d like to believe that those of us with rare and chronic illnesses bring something to your lives, that we can remind you about things like tenacity and resilience. I’d like to think that not only can we be downright amazing people but faithful friends.
So what do you say, will you be a faithful friend?
Reprinted by permission from Rare Daily by Global Genes.