Last week, I had the honor of speaking at an event organized by Katy Brennan for Suffering the Silence, where a bunch of women stood in a room together and talked about how they’re living incredible lives even though they have chronic illness and disability. To be among women like me—to hear their stories, hopes, dreams—was profoundly moving. When called to speak, I changed course from reading from my book to instead read something I wrote more recently. It’s about the importance of making ourselves BIG instead of being forced to be small.

Here’s my quick piece. I hope you like it! If it resonates at all, please join the conversation in the comments and share your perspective. Thanks!

It’s time to make ourselves BIG

as a child… and as a young woman, and – heck – even today – my parents emphasized the importance of not making trouble. of not getting in anyone’s face. of not being too “different”.

and WOW, society sure has reinforced to me that i need to stay small. don’t ruffle any feathers. don’t make anyone uncomfortable. don’t be too needy. don’t be too noisy. don’t be too weird.

to be a “good” girl. to stay in line. to respect elders. to respect men. to respect doctors. to respect everyone else but myself.

so i learned to make myself small.

and that has done me an enormous disservice when it comes to my health.

here is a brief list of the ways in which i’ve made myself small when it comes to my health:

i’ve said yes to medications i was scared of, without asking questions about side effects.

i’ve held my questions when a doctor tells me they’re sorry, but they’re in a hurry to see the next patient.

i’ve hidden how much i was hurting from friends, family – even my health care providers – because i didn’t want to seem too “needy.”

once, in agonizing pain, i waited an hour to leave the house for the emergency room because my ex-husband didn’t want to miss an episode of the tv show ally mcbeal, but he also didn’t want me to go to the E.R. alone. i thought it wasn’t a big deal. it was: i had a ruptured ovarian cyst and the physicians were shocked i was even able to walk myself into the E.R.

i’ve changed clothes before a doctor visit because i want to look “nice enough,” like i’m taking care of myself. but i have to be careful to not look “too nice,” like i’m not sick enough to warrant care.

and i’ve stayed with doctors years longer than i should have because i thought they would be disappointed in me if i left them for another, more appropriate provider.


the world wants us to be small. to be quiet. to be delicate. to be, what’s the word, NOT TOO HYSTERICAL when it comes to our health.

so i call bullshit. BIG bullshit.

i’m here to invite you to join me in being BIG.

here is a brief list of the ways in which i’ve been learning to be big when it comes to my health:

i wear whatever the hell i want to doctor’s visits, including my hair, makeup, clothing, jewelry, tattoos – and MY PERSONALITY. if they don’t like that i use humor to cope, that i laugh so loud it often makes people’s heads swivel, that i cuss a bit… and cry when i’m frustrated, well then, they’re not a good fit for me.

i fire doctors who don’t respect my time, my knowledge of my own body, or my 20+ years of experience of chronic pain and illness. and i tell everyone i know that THEY are allowed to fire their doctors, too.

i tell my *new* husband when i am injured or feeling like crud, even if he’s watching tv, and you better believe he’s gonna turn that tv off and ask how he can help me.

i ask a lot of questions at every doctor visit and when i pick up medications, and if i don’t like the answers, i ask follow-up questions. a LOT of questions.

i share my experiences at my website, on social media, in my email newsletter that reaches 5,000 people every week, in my book, in my speeches, on podcast interviews – and at events like this. basically i blab all over because i want to reach as many people as is humanly possible.

so. will you join me? will you get BIG?