I Am Not a Textbook

Hello again internet world!

I know I promised more regular blog posts, but life has been busy.

I am taking patho this semester. I have always enjoyed patho because I love learning about how different diseases work. I am also always curious what the textbooks say about my chronic illnesses and how it reflects my lived experience.

Spoiler…it almost always is very inaccurate and generalizes

This week is our genetics module. As I learned in my high school biology class you can not talk genetics with out talking genetic disorders. Of course Turner Syndrome gets brought up. If you’re new here Turner Syndrome is a genetic disorder that only affects females. Instead of having 2 X chromosomes we have 1 The primary symptoms are short stature and premature ovarian failure (I can’t have kids on my own). The description in the textbook is usually accompanied by an unflattering picture similar to the one below

I hate the textbook picture because it is not a reflection of what I look like as someone living with Turner Syndrome. A quick google or instagram search will confirm that most of us with it do not look like this. It annoys me because whenever Down Syndrome is talked about they always pictures of happy, smiling people who have Down Syndrome. For some reason they can’t do that with any other genetic diseases??? Come on!

I hate reading the description because it usually mentions somewhere that about 99% of cases of Turner Syndrome end in spontaneous miscarriage. It makes me feel lucky to be here and also like I shouldn’t here. This has created this weird complex where I feel like I am supposed to be doing something super amazing with my life since I beat the odds. Like I need to prove I am worthy of existing.

I wish medical textbooks and curriculum would focus more on really showing the patient experience. It makes for a more empathetic healthcare provider which I believe gives better patient care and better patient outcomes. This part of why I chose nursing over being a doctor. Also I hate math.

Thanks for sticking with me though all my ramblings. One last thought, February also happens to be Turner Syndrome awareness month, so who that’s cool I guess