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i want to tell you a story about being navigating healthcare and advocating for myself as a young woman in the US.
after testing positive for the BRCA2 mutation, which gives me an 87% chance of breast cancer, i decided to get a preventive double mastectomy.
i'd mulled over the decision for years, & after speaking with my oncologist & assessing my risk, i knew it was the right decision for me
i'd mulled over the decision for years, & after speaking with my oncologist & assessing my risk, i knew it was the right decision for me
for reference, when calculating lifetime risk, a team of oncologists and geneticists went through my family history, taking into account my family's history of cancer, my age and lifestyle, and many other factors.
needless to say, it's thorough.
needless to say, it's thorough.
i weighed many factors, including my own health (really good) and age (26 at the time), and knew that i'd rather be proactive with my health while i'm young than have to be reactive when i'm older.
i felt confident in my decision, and was supported by my oncologist.
i felt confident in my decision, and was supported by my oncologist.
then i started searching for surgeons.
i'd get on the phone with schedulers and nurses and tell them that i'm BRCA2+, but when i mentioned my age they almost always ended the call, saying that the surgeon wouldn't operate on or meet with me.
i'd get on the phone with schedulers and nurses and tell them that i'm BRCA2+, but when i mentioned my age they almost always ended the call, saying that the surgeon wouldn't operate on or meet with me.
several surgeon offices wouldn't even do a *consultation* with me.
"you're too young"
"you don't have cancer yet"
"you don't need to do this"
they said this while knowing i have an 87% chance risk of breast cancer. they refused to take me seriously.
"you're too young"
"you don't have cancer yet"
"you don't need to do this"
they said this while knowing i have an 87% chance risk of breast cancer. they refused to take me seriously.
facing a BRCA diagnosis is difficult. facing that diagnosis while having to advocate for myself to be taken seriously was...almost insurmountable. i almost gave up.
my health was on the line and I. Almost. Gave. Up.
my health was on the line and I. Almost. Gave. Up.
i finally found a surgeon who immediately took me seriously. she listened to all of my concerns & agreed that a preventive double mastectomy was a good move for me.
it was such a stark difference from my other meetings that i cried after meeting with her for the first time.
it was such a stark difference from my other meetings that i cried after meeting with her for the first time.
fast forward a year and i'm finally healing from my last breast cancer prevention surgery with her.
throughout every step of the process, i felt heard. when i was in pain--more pain than i expected--she immediately listened and helped me.
throughout every step of the process, i felt heard. when i was in pain--more pain than i expected--she immediately listened and helped me.
i never felt like i had to prove anything to her, from my BRCA diagnosis to my pain levels, because i know that she is my ally and here to support me.
this is what a doctor should be to a patient.
this is what a doctor should be to a patient.
now that i'm on the other side of surgeries, i'm so frustrated that i had to advocate for myself to the extent that i did.
i was gaslit, ridiculed, and flat out ignored by so many surgeons.
i was gaslit, ridiculed, and flat out ignored by so many surgeons.
when telling doctors that i'm in pain, my immediate thought shouldn't be "i hope they believe me" but rather "they will help me"
in a 2014 survey of over 2,400 women, 91% of women felt the healthcare system discriminates against them. 50% were told 'the pain is in their head'.
in a 2014 survey of over 2,400 women, 91% of women felt the healthcare system discriminates against them. 50% were told 'the pain is in their head'.
that said, i know i'm privileged. it is infinitely more difficult for Black patients to be heard in the medical space due to structural discrimination and racism.
a 2012 study showed that Black patients were 22% less likely than white patients to get medication when in pain.
a 2012 study showed that Black patients were 22% less likely than white patients to get medication when in pain.
i'm so lucky that i found a surgeon who listened to me. far too many people don't get that option. they live with their pain or ignore their medical concern because it is *too exhausting to work day in and day out to change the minds of those who should be taking care of you*.
lives are lost because doctors don't take us seriously. and this needs to change.
period.
period.
oh my god a typo in the VERY FIRST TWEET GAHHHH
a couple of people have asked who my surgeon is. her name is @annepeledmd— she is my role model and one of the best oncoplastic surgeons in the world. i am so, SO grateful for her every single day. i can’t recommend her enough.
