When my wife, Anya, was diagnosed with inflammatory breast cancer in February 2004, she was pregnant and not expected to live two years.
She lived with metastatic breast cancer long enough to see our son’s 14th birthday and in the meantime published four books of poetry.
Since we hear much about prevention and cure in October, I thought it might be helpful to list a few pointers for friends and family of the 30 percent of breast cancer patients with incurable, chronic illness.
1. Don’t fear the ill.
We sometimes stigmatize or avoid people with incurable illness because we fear death. “Do not make me your nightmare,” Anya wrote. If we would accept our own short lives, we’d see incurably ill people as fully human, not as frightening reminders of mortality.
2. Don’t pity the ill.
Pity takes secret solace in its safe separation from the person pitied. In “How to Talk to a Sick Woman,” Anya asked: “Do you think I want your dish-rag pity / wrung all over my lap? Your cat eye comfort? Everyone dies.” Love embraces; pity condescends. Women and men with incurable illness deserve active love, not distant pity.
3. Don’t abandon the ill.
Too many husbands leave their spouses with incurable breast cancer, and too many friends turn away from chronically ill people, unable to handle long-term illness in a health-obsessed culture. “Faces turn away from me,” Anya wrote, “— I’m taboo, now.” Be present with chronically ill people, not in occasional acts of charity but in every day friendship.
4. Don’t make a saint of the ill.
Many people looked to Anya as a kind of living saint or warrior queen — “the Madonna of cancer, / your bow-arched Amazon.” But Anya felt that turning incurably ill people into saints is just the flip side of pity, a sign of secret distance. “My days are as ordinary as yours,” she reminded us.
5. Don’t offer positive thinking as a cure for illness.
Anya wrote about feeling “lonely among those gifted with easy hope.” Be humble before the mystery of suffering. Don’t offer easy answers, cheap advice, miracle cures. Illness isn’t a riddle for you to solve. Just be present.
6. Don’t dehumanize the ill.
To doctors: treat your patients the way you’d treat your children, mother or sister. Don’t dismiss their pain, announce a prognosis without compassion, be merciless in your treatment, turn the chronically ill into a number. After a doctor breezily told Anya that her treatment was a crapshoot, adding with a shrug that “six months of life is better than nothing,” Anya wrote in a poem, “Lord, send down your angels of plague and dread, / Bring the high low, tie the wrists of the healers to the hospital beds.”
7. Don’t take away the health care of the incurably ill.
For the past two years, as she watched the Affordable Care Act imperiled, Anya worried about our family’s future. “I don’t know how we’ll survive financially,” she wrote in her journal. “I can’t bankrupt the family.” People with preexisting conditions or chronic illness shouldn’t be denied health care because Congress wants insurance companies to make a bigger profit. If you love people who live with illness, support benefits for families living with illness.
Remember: you’re going to have awkward moments. It’s OK. Acknowledge the failure of language, of gesture, and know that people with chronic illness still love you. And they need you to remain unconditionally present, as one of Anya’s metastatic friends put it, “as we ride the roller coaster of our emotions.”