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.
small.
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?
LOVE THIS!!! I’ve definitely stayed small most of my life but am starting to try and get big more often!
This is fantastic, thank you Jenny for sharing! I spent years being a “Yes” person, it interfered with my health, my friendships, even people who worked for me, doctors included. Not anymore, I’ve been speaking up for myself much more and it feels GREAT to get BIG!!!
oh i’m so excited that you feel great being big! get even bigger! 😉
woo hoo! we’re all gonna get SO BIG
Babes… let’s BIG THIS SHIT UP
This is a great post! It really struck a nerve with me. Like you, I was taught to be a “good” girl, to keep a stiff upper lip, not to say how I really felt, to suck it up and carry on at all costs–even though I had a monster migraine with nausea to match, etc. As a result, I learned that my pain wasn’t valid and to detach from how I felt. I developed a mask that I wore for years. Only my husband and my two very closest friends saw me without it. After finally being diagnosed with migraine and fibromyalgia at ages 31 and 35, respectively, I began having massage therapy and how I felt was validated for the first time. It was very important for me. Through years of massage therapy and chiropractic, I gradually stopped detaching from myself and learned to tell another person where I hurt. At first, I had to write it on a piece of paper to hand over at the beginning of my appointment because it was so hard to actually say the words.
These days, I have no problem telling my doctors or anyone else how I feel. I ask lots of questions until I’m satisfied with the answers. I look up meds before filling prescriptions. My former family doctor, now retired, once wrote a note to the nurse who would be calling me with test results. The note said, in effect, that the nurse should give it to me straight rather than talking down to me because I was used to researching medical stuff for myself.
I think I’ve succeeded in teaching my two (now adult) daughters how to advocate for themselves and how to be “big.” When they were growing up, I tried to strike a balance between not coddling them and not discounting how they felt. Both had frequent migraines from an early age. They also had fibromyalgia by middle school, although it doesn’t seem to be a big factor in their lives now. I like to think that’s due partly to my insistance on them having massage, chiropractic, and meds for the migraines early on.
Thanks so much for making your post public!
i’m so thankful that you are teaching your daughters to follow your lead. BIG BIG awesome.
LOVE THIS…I am glad you GOT BIG….I have been for several years NOW…I take SHIT from no one when it comes to my 12 specialists and the two major hospitals I deal with…I dont have time and either do they…There is a great understanding when you get to that point for everyone. And respect at that levels seems to go along way also…..Keep it going
thank you! it’s not easy, is it? so much harder to get big. so YAY, thanks for being a great role model for so many of us!
yuge fist bumps, glitter britches. I too fly my flag no matter what and hope to lead by example! #gobigorgohome <3 <3 <3
well you’re my go big guru, girl, so thank you!
Oh my this resonates so strongly with me!
Makes me realise how small I’m making myself….Never thought of it like that before…. especially when it comes to medical professionals.
I knew I neede to work on this but this has helped highlight how baldly I need to work on it.
I mean for goodness sake last week when I was in hospital I almost managed to convince myself one of my long standing symptoms was different to how I actually experienced it because a doctor questioned it a couple of times……that is not ok! That sort of reaction is not serving me well.
I am a bit better with family and friends. I’m mostly pretty good at making myself big with my husband.
Thank you for the extra push to start tackling something I really struggle with.
i am so happy to nudge you – with love – toward being bigger. i’m so glad you’re spotting areas where you can improve. yay! big BIG!
FANTASTIC post!! Thank you.
yay, cat! thanks so much. have you thought about this before in your own life?
Jenny thank you so much for this go big article. I used to be small when I was growing up because if I complained about being sick my dad would slap me around and say now you have something to hurt about. In his side of the family kids were to be seen not heard. So that made me be small all my life but now that I’m adult I let everyone know how I’m feeling even my husband now knows if I’m not feeling well don’t mess with me and even my dad now I don’t let him control me when I visit I let him know how I feel and if he starts on my mom I stand up for her because she won’t. I also do the same thing with my doctors if the don’t listen they are out the door on to a new doctor. thank you so much for all you do I endorsed your reward also keep up the great articles and work you do for us chronic babes!
i’m so glad this resonated for you! YES stand up for yourself, babe! love it. xo and p.s. thanks for endorsing my award!
Well written and pointed! Thank you for your inspirational message. However, as a 55 year old pain warrior let me add to the importance of going from small to B I G!!!!
1. As a woman grows older she becomes invisible; she’s not ALLOWED to age.
2. Due to advance aging it adds greater importance to these myths: a) she’s here for attention; b) she’s just a complainer; c) she’s doesnt want to grow old; d) she’s old so her healthcare is of no importance; e) she’s old so she’s wasting valuable healthcare resources and time.
ALL of these are never true, no matter how old a person has attained. Grow B I G!!!! now, before reaching midlife and advancing years (over 40+). What you practice today will aid you in the far future.
Help change the demographics of ageism while advocating visibility for chronic illness(es). Empower those labels placed upon you into positive, unique BIG!!!! titles that exhibit your experience. Plan your advance years and research the aged body, mind and spirit. She is a BEAUTIFUL person – STILL. Like in your youth its matter of choice on how you’ll age.
woo hoo! i love your message, pamela – i appreciate your perspective as someone who’s a little bit older than me. hugs!
This is such a good post that made me feel really empowered and hopeful! Thank you! 😊
yay! i’m so glad it’s helpful 🙂