Lara Parker wrote this on Instagram a while back and I just loved it, “If you’re tired of hearing about my pain, imagine how tired I am of living in pain.”
If it wasn’t for the women who have created a voice for chronic pain sufferer’s, many would still be undiagnosed, there would be very few positive changes in women’s healthcare, and things may never get better for us.
These women are advocating on social media, they are publishing articles, and they are speaking out to the public. They live in your neighborhood, they work in your office, they shop at the same grocery store as you, they even go to the same doctor as you – the one you sent a Christmas card to last year is the same one who dismisses cases like theirs time and time again.
This morning I saw a new gynecologist about my prolonged, heavy bleeding and recurrent UTI’s. Everything was going well, she was attentive and seemed eager to investigate until I told her my past diagnoses of endometriosis and interstitial cystitis. That’s when I started to lose her.
Like patient’s are supposed to, I told her my history. I mentioned my successful surgery in 2016, and how this prolonged bleeding is a new symptom for me that started three months ago. I also told her about my upcoming thoracic surgery for endometriosis at the Center for Endo Care – which is practically rehearsed by now – so that she could better understand my situation. She seemed dumbfounded and skeptical of my thoracic endometriosis–I can’t seem to find a gynecologist who isn’t. I don’t even bother bringing in the surgical photos anymore.
She asked me if I’ve tried hormones. I told her I have tried many times but my body doesn’t tolerate them well and the side effects are not manageable.
She stood up, and rather dismissively said, “Good luck with that surgery” then walked out. The nurse told me they’d let me know about my urine culture, but the prolonged bleeding was never addressed. I guess she was too tired to deal with a complicated case today.
I don’t want to be silent. I don’t want to be ashamed. I don’t want to worry about what other people think and if talking about my chronic illness is inconvenient for them. I don’t want to feel judgement as I try to express what it’s like in this lonely, invisible bubble of pain.
There are strong women speaking out every day and let me tell you, for us, it’s going to take an army.