Saturday, July 13, 2024

You Don’t Have To Look Sick to Be Sick With Metastatic Breast Cancer

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It is like clockwork. And I believe it’s said with good intentions, or perhaps it’s purely reactive with no thought at all. But how we look and feel isn’t always linear, and this innocent comment can be dismissive and triggering. 

“There’s a lot of stigma in terms of how someone should look if they have an advanced illness, how someone should be behaving, how someone should be living, how someone should be thinking. There are a lot of ‘shoulds,'” says Sheila Lahijani, M.D., an associate professor of psychiatry and behavioral sciences at Stanford and the medical director of the Stanford Cancer Center Psychosocial Oncology Program. “It’s very troubling when someone has their own suffering inside to then be met with, ‘Well, you don’t look that sick,’ because that invalidates or dismisses that person’s suffering. Everyone who gets diagnosed with cancer has some form of suffering.”

Until there is a cure for breast cancer, this is a forever thing. Metastatic disease is unpredictable. It creates a life of the unknown even when it’s imperceptible. 

“I haven’t had a mastectomy. I haven’t gone through chemo yet,” says Quick. Remarks like “You look healthy” can “discount the current challenges or potential future challenges for someone living with this,” Quick adds.

We equate a healthy appearance to being healthy; a full head of hair can deceive those around us into believing everything is normal. Over the last year and a half since my breast cancer metastasized, I have even experienced this through the perspective of my closest friends. The pendulum is swinging toward the highs. Time keeps ticking. “It’s not like you are going to die. You are fine,” my friend told me not too long ago. A bold statement it was (especially because everyone will die) that was followed by a long pause, but I knew it wasn’t said out of a lack of understanding. 

“Someone who’s closer to you is in a more vulnerable position of getting hurt and feeling loss. That differentiates that person from someone who’s more of an acquaintance and has a different kind of investment or doesn’t have as much vulnerability,” says Dr. Lahijani. 

I’ve learned to not take a lot personally. The truth is, there isn’t a perfect thing to say. “The person who’s saying that statement [like ‘You look healthy’] or expressing that confusion, so to speak, is finding some difficulty coping with what’s been said as well,” explains Dr. Lahijani. “Maybe not knowing exactly how to approach the person with the metastatic breast cancer, a sense of helplessness in terms of, well, what do I say or do when I actually wasn’t expecting this?”

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