I just had an experience that reminded me that as patients of a confusing and rare-ish medical condition we really need to make sure that we stand up and fight for ourselves. And I mean that in every aspect of our lives - against insurance companies, Dr.'s who belittle us, bosses who write us off, teachers who don't believe us, anything! We cannot take things lying down. We need to fight fight fight!!!
I recently was told by the head of the scholarship committee that my scholarship for next semester was being taken away because I am taking an incomplete this semester for MEDICAL (TN) reasons. I could have accepted that. This did, after all, come from the head of the committee. But after a good cry, I decided NO! I am not going to take this lying down. I contacted my advisors, and other members on the board of this scholarship. They in turn alerted the rest of the board of the scholarship committee. They all met and decided as a group that of COURSE I should keep my scholarship for next semester. A medical incomplete for the semester was perfectly acceptable reason for not complying with the B+ average or higher standard.
This just reminded me of the times I have had to spend hours on the phone with insurance companies who have said they aren't covering MRIs or Dr.s visits, when it turns out it was their error, and of course they are going to cover it.
The point is, let's remember to fight for ourselves. It is draining, it is frustrating, but persistence pays off. No one else is going to do it for us! We must be our own advocates.
