A decade ago, I rolled over in bed one morning and felt some sort of mass in my abdomen. I rolled onto my back and pressed my hand against it – yes, there was something real, solid and frightening in my abdomen. I had been experiencing heavy bleeding during my periods for several months prior and had put off going to the doctor. I was always too busy, had too much on my plate and was too willing to prioritize everything and anything over my yearly physical exam. I lay there, anxious and afraid, unable to ignore the solid something beneath my hand. So, I jumped up and immediately thought about where I could go to find out what this thing was and if it was cancer. It was a Saturday and my doctor’s office was closed, so I went to my local Planned Parenthood and asked for an exam. I was very emotional and the staff was very patient. After the exam, I was told that I most likely had a uterine fibroid and needed to see my gynecologist for diagnosis and treatment.
I remember asking what the hell a uterine fibroid was and being told that uterine fibroids are tumors that grow within and outside of the uterus, that they pose their own health risks but aren’t cancer.
I thanked everyone at the health center. I think I might have thanked them all twice. Then I went home, sat down on the couch next to my dog and cried.
I was relieved but not fully, because uterine fibroids were a mystery. Later that week my gynecologist confirmed the diagnosis of uterine fibroids and we began to work through a treatment plan. I did a lot of research. There were ultrasounds and blood tests and a serious discussion of diet and my general health. What I remember most was that my doctor and I had a great dialogue about my condition and my life. We discussed whether I planned to have children through a pregnancy. I did not and that has not changed. I remember the options that were on the table based on the size and location of my tumors and my age and health. In a matter of days “choice”, so often seen as only having to do with pregnancy or abortion, was suddenly a huge factor in my life. I wasn’t pregnant, trying to get pregnant or even trying to protect my future ability to get pregnant but choice meant the world to me at that moment.
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I entered into a new world of doctor’s appointments and insurance battles. Many of the treatment options for fibroids are classified as fertility treatments and every month my insurance company would reject my claim because they didn’t cover fertility treatments. My doctor’s office guided me through the process of challenging the rejection, confirming that my treatment was not a fertility treatment and then resubmitting the claim. I can’t imagine having to wage those battles without the assistance of the staff at my doctor’s office. As it was, I found the week long back and forth debate that took place every month like clockwork emotionally exhausting. At one point I found myself screaming at the insurance representative in my cube during work, demanding that she acknowledge there are more reasons to treat fibroids than to prepare for a pregnancy.
My debates, arguments and battles have not been limited to insurance representatives. Over the years I’ve made a study of how friends have reacted to my treatment decisions. I’ve had self identified pro-choice friends confront me for taking the pill to manage the heavy bleeding during my periods because they feel fibroids can be managed just fine through a special diet. I’ve had other friends act as if they’d stop talking to me if I chose to have a hysterectomy. When I decided to have my fibroids surgically removed after a year of treatment, a co-worker applauded my decision because it “preserved my reproductive future” while another expressed concern over the risk of my doctor having to perform a hysterectomy if there were complications. I filtered all the advice through the understanding that their hearts were in a good place, but they always seemed to ignore the fact that I was and am an active participant in my treatment. That’s what choice is all about, having the ability to partner with a doctor to make decisions that are right for the individual. That doesn’t mean those decisions would be right for someone else, but that’s the point lots of people missed. This was about my health and my uterine fibroids.
When I explained that I didn’t want to have children and that I considered hysterectomy a future option, some people dismissed my claim and others even went so far as to assure me that I’d change my mind when I got older or that I’d change my mind once I had a baby. Suffice it to say, I was shocked. The decision whether or not to have a child is a huge part of reproductive choice, yet here were people acting as if my choice not to have children was flimsy at best and subject to change by actually having a baby.
What stood out then and stands out now is how challenging truly supporting choice is. Some pro-choice people struggle to respect the doctor patient relationship, too. I’m not saying that their struggle is the same as anti-choicers who lobby to restrict a woman’s access to birth control or abortion. Many of my friends referenced the history of black women who were given hysterectomy as the only option to treat fibroids and their words of caution were coming from a place of concern based on that history. My situation was different. The fact remains that, when a woman has a reproductive health issue, lots of folks jump up with lots of opinions and a lot of those opinions assume the patient hasn’t thought the situation through or is too emotional to make a sound decision.
I’ve thought a lot about the privilege of choice. I have health insurance and I live in a city with a lot of pharmacies and health care providers. I can consider multiple treatment options that are covered through my insurance. I go to my pharmacy to pick up my birth control pills and rarely wonder if the pharmacist will refuse to fill my prescription because she or he assumes I’m getting them as birth control and has some moral objection they’ve decided trumps the legitimacy of my legal prescription.
When the Missouri State Legislature considered a bill that would have protected pharmacists or pharmacies that refused to fill prescriptions because of a “moral” objection, I thought about my situation. I imagined walking into my local pharmacy and having someone decide to refuse to fill my prescription because they assume everyone on the pill is taking it as contraception. I had a waking dream of confronting the pharmacist with the fact that, without the pill, I bleed for an average of 14 days straight. Prior to regulating my periods with the pill, I was dangerously anemic and suffering from exhaustion. I could see myself demanding to know where they get off forcing me to explain the who, what, where and why behind my prescription. It never happened. The legislation never passed. But I was prepared for the reality of some fellow Missourian wielding power in the name of religious freedom, trying to take away my freedom of choice. A freedom of choice that had nothing to do with preventing pregnancy and that shouldn’t have been up for discussion even if it did.
Having uterine fibroids isn’t rare. Since my diagnosis, I’ve met many women who have them and who have chosen different treatment paths. But having uterine fibroids has provided me with a different view of reproductive choice and reproductive justice. I’ve worked in partnership with my doctor to protect my right to health. It’s been a unique journey and I am now considering the next phase, which will likely include a hysterectomy. I know that a lot of people will have a lot of opinions and advice and I welcome the feedback as long as it is given with respect and with the understanding that the ultimate choice will be mine to make. As a reproductive justice activist, this is what I fight for every day. Choice should be respected as a right, not a privilege.