In October of 2020, I had a routine mammogram that showed some “areas of concern,” as the radiologist put it. The week before Thanksgiving, she told me the second mammogram had confirmed those areas were concerning enough to warrant a biopsy.
A different radiologist called me in late December. “I’m afraid I don’t have great news,” he said, sounding worried and sad. “We found pre-cancerous cells in two areas of your right breast. You have ductal carcinoma in situ.”
“Pre-cancer?” I asked.
“Yes. Technically, stage zero breast cancer.”
“Well,” I started, unsure what to think. “I guess this is the best bad news you could have given me.”
The doctor chuckled. “That’s a great way to look at it,” he said, and I felt absurdly proud of my measured reaction.
When is being told that you have cancer not completely terrifying? When you’ve lived with chronic pain for 43 years.
***
I was 6 years old the first time a doctor said he didn’t know what was wrong with me. I’d told my parents that my head hurt, so they took me to the pediatrician. But my exam was normal and the doctor couldn’t find a reason for the pain.
Since then, I have grown accustomed to doctors telling me that they don’t have a diagnosis; or that the pain will fade as I get older; or that maybe the pain doesn’t actually exist at all, since they can’t find a reason for why my head constantly aches, why my eyes always hurt, why my wrist spontaneously developed debilitating pain when I was 19, or why I began experiencing intense, constant muscle spasms a decade later. I have spent my entire life living with pain that most doctors have refused to take seriously.
This is not unusual; chronic pain, which affects a higher proportion of women than men, has a long history of being under-researched. It is rarely taught about in medical schools and, most perniciously, is often dismissed as being all in the sufferer’s head.
I have lifetime residency in Susan Sontag’s famous Kingdom of the Sick, but my cancer diagnosis ushered me into a new subdivision, one where everyone had heard of my diagnosis and was fluent in the language of treatments and medications.
After almost 40 years of beseeching doctors, relatives and friends to believe that I really hurt, the automatic seriousness with which I was now greeted stunned me into silence, shock and rage.
My anger was as complicated as my cancer diagnosis was simple. I am fortunate that those closest to me have always believed in my pain. Even when I was a young child who lacked the words to easily describe what I was feeling, my parents always took me seriously and set up appointments with a wide range of specialists, from the pediatrician to a neurologist, a psychiatrist and an ophthalmologist.
My sister and my closest friends don’t always understand my limitations, but they accept that those limits exist. When we were planning our wedding, my now-husband and I agreed that we should ask our officiant to keep the words “in sickness and in health” out of our vows, since they seemed laughably redundant for us; by the time we got engaged, we’d already been through my first two surgeries together.
All of the support in the world, though, can’t make up for the reality of living with a lifelong condition that few people understand. Because all of the damage to my body is under the skin, I don’t look like I have any health problems. Even when I’ve used arm braces, worn visible medical devices, or had plaster casts that stretched from palm to bicep, I’ve gotten impatient stares as I’ve fumbled for my wallet at a cafe or hesitated before opening a door.
So it’s easy for people to forget, even those who should know. It’s easy for my aunts to joke that they want the pain medicine that kills my appetite; it’s easy for friends to assume that since the cast is off, my wrist has been fixed; it’s easy for doctors to look me in the eye and tell me that maybe I should learn to live with the pain.
But while my breast cancer is just as internal as my torn cartilage and compressed nerves, relatives, family friends and work colleagues have come out of the woodwork to offer best wishes, prayers and support.
I appreciate all of it, but can’t help but wonder why none of my prior 10 surgeries ― especially the ones that involved my head and face, or the operation where part of my ulnar bone was replaced with a metal plate ― failed to stir the same concern.
I know that part of this is because the word “cancer” conjures such a fear of mortality; but even though the mortality rates associated with my other health problems are almost nil, I was just as scared before those operations, and my life was just as disrupted in the following weeks and months.
The idea of having cancer is, for so many people, frighteningly easy to imagine. Even if they don’t personally know someone who’s had it, odds are that they know what the pink ribbon symbolizes, or have seen a movie or read a book or watched a TV show where a character has cancer.
And while virtually everyone will experience some kind of physical pain in their life, having pain that never goes away is much harder to imagine. Chronic pain isn’t talked about as widely as other health problems, especially cancer, and is often misunderstood and misdiagnosed.
There’s a failure of empathy when it comes to chronic pain, an attitude that something that sounds so amorphous must not be real. Even within the Kingdom of the Sick, there are hierarchies.
***
My chronic pain hasn’t even had the decency to let cancer take center stage. Instead, it’s heavily influenced every decision I’ve made about how to treat this disease.
Years ago, I realized that my muscle spasms were particularly bad when I had my period. So, with my gynecologist’s blessing, I began taking the birth control pill every day without breaking for a placebo week. The pill helped keep my spasms on an even keel and, unlike muscle relaxers, didn’t put me to sleep. But the birth control pill is contraindicated for breast cancer.
And as my oncologist explained, having only the cancerous breast removed would mean that not only couldn’t I take birth control pills, but that I would have to take tamoxifen, a preventive medication, for five years.
“Given your medical history,” she said, “I don’t think you’d tolerate an anti-estrogen medication very well.” The only way to stay on the medication that helped and avoid the one I couldn’t handle was to have a bilateral mastectomy.
“How do you feel about taking both off?” my best friend asked me after I told her.
“Like it’s the best choice to make, but it’s still pretty crappy,” I said.
“I’d do the same thing,” she said. “You’re getting implants, right?”
“Yeah.”
“Go bigger,” my friend advised, and I laughed.
***
If my muscle spasms had been taken as seriously as my breast cancer ― if all that concern and research and energy had been there when the spasms first developed, or after the first year, or after the first time I landed in the emergency room in such pain I couldn’t speak ― would a bilateral mastectomy have been my only realistic option? Would I have had to remove a healthy body part in order to continue treating a damaged one? Would I have needed the extra drains and stitches and drugs to manage the pain of having not just one but both breasts cut off my body?
I’ll never know. But after a lifetime of living here, this is the first time that I’ve been fully recognized as a citizen of the Kingdom of the Sick. And citizenship comes with privileges.
It’s not just the flowers and food and cards and chocolate ― so much chocolate ― that flooded my house in the days following my mastectomy and reconstruction. It’s not just the sincere assurances from my employer that I don’t need to worry about taking time off for surgery, for recovery, for radiation treatments. It’s not even the grace extended to my husband from his employer, that he should take time off for himself, for me, for our daughter.
Because now I have an illness that is considered “acceptable” ― worthy of attention, of empathy, of sympathy. Now I don’t have to become fluent in medical jargon to have doctors listen to me, to fight to prove a negative: that even if my body looks “normal,” it really is damaged. I am treated as an equal partner in my health care, someone whose opinions and desires should carry weight.
And finally being considered an authority on my health ― that is the greatest, and most wrenching, privilege of all.
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