We Scare People
Breast cancer survivors band together like sisters. You can show your affinity for this tribe via bumper stickers, special license plates, pink clothes, be-ribboned gear, even tattoos on your body. If you hear of another survivor or even someone currently in treatment, you are welcome to share that you, too, had breast cancer (or your mother, sister, aunt, or grandmother did). The person you are talking to will smile wryly and sympathetically, usually ask what stage you were and what treatment you had to go through, then ask how you are now or how many years you’ve been cancer-free.
But the cordiality always ends when you don’t give the desired response, a cheerful, “Six years cancer-free!” or some such thing. When you respond that you’re not fine now, that your cancer came back and it’s now in your bones, suddenly they can’t wait to get away from you. Like they might catch your terminal disease just by talking to you or standing nearby. Like something about you is the reason it came back for you and not for them.
Last week I had the opportunity to speak to a group of women in another state. They were a breast cancer support group that included women with early stage diagnoses, as well as some with metastatic diagnoses, I was told. Since being diagnosed metastatic, I’ve learned an ugly truth: Support groups often don’t want women with a metastatic diagnosis to participate. I’ve talked to people who have been asked to leave support groups, simply because their diagnosis is too hard for the other group members to think about, because it makes these other women feel nervous or depressed.
I get it – stage four cancer is scary. No one knows what to say. Everyone is hoping their fate will not be similar. Like I said when I was first diagnosed, I’m the elephant in the room now, the one most people don’t want to think about, the one most cancer organizations want to pretend doesn’t exist so it seems like we are winning the fight against breast cancer. But fellow breast cancer patients not wanting to meet with another “sister” is tough to swallow. Where are we supposed to get support from? There aren’t enough of us in any one vicinity to have our own support groups.
So I was pleased to be asked to participate in a support group that had a mix of both types of diagnoses. But as soon as I arrived, the social worker leading the group pulled me aside and began, “I’m sure your story is lovely and inspirational (she wasn’t given the story ahead of time), but there are some fragile women here who aren’t in a good place to hear your story.” Essentially, she was sure my story was too sad, too depressing, too scary, to share with these fragile women. She wanted me to modify it to make it more hopeful.
If only I could! Did she think that I want this to be my story? That I delight in making people cry when I share that I might not live to see my 25th wedding anniversary, or even my 10th? How does it make me feel to be told that, not only does a mere 7% of breast cancer-designated funds raised go to metastatic breast cancer, but that fellow breast cancer patients don’t even want to think about my existence? That I should alter my story to keep them from getting sad? What about me, getting dead?
Of course my response was solicitous, and I worked to reassure her that my story wasn’t depressing, it was primarily hopeful and uplifting. I certainly don’t do this gig to bring people down! I want to encourage and inspire, in addition to raising awareness. But her request just didn’t sit right with me. Nor do the requests I’ve heard about from other metastatic women who’ve been asked to leave support groups because they’re scaring the early stage patients.
Our stories are hard to hear, the things we go through are painful, and the future we face is grim. But pretending our ending is otherwise is to do us a disservice. Our lives matter. Please don’t sweep us under the rug or hurry quickly away from us because you prefer the message of “fighting,” “surviving,” or “beating it” to prevail. The fight is not yet won. The cure has not been found, no matter how much you tout that your efforts are “for” it. Sit uncomfortably and hear our stories, if we’re brave enough to get up there and share them. Just please don’t ask us to remain quiet or to tone down our reality just to make you feel better. Maybe you should ask what you could do to make us feel better.
But the cordiality always ends when you don’t give the desired response, a cheerful, “Six years cancer-free!” or some such thing. When you respond that you’re not fine now, that your cancer came back and it’s now in your bones, suddenly they can’t wait to get away from you. Like they might catch your terminal disease just by talking to you or standing nearby. Like something about you is the reason it came back for you and not for them.
Last week I had the opportunity to speak to a group of women in another state. They were a breast cancer support group that included women with early stage diagnoses, as well as some with metastatic diagnoses, I was told. Since being diagnosed metastatic, I’ve learned an ugly truth: Support groups often don’t want women with a metastatic diagnosis to participate. I’ve talked to people who have been asked to leave support groups, simply because their diagnosis is too hard for the other group members to think about, because it makes these other women feel nervous or depressed.
I get it – stage four cancer is scary. No one knows what to say. Everyone is hoping their fate will not be similar. Like I said when I was first diagnosed, I’m the elephant in the room now, the one most people don’t want to think about, the one most cancer organizations want to pretend doesn’t exist so it seems like we are winning the fight against breast cancer. But fellow breast cancer patients not wanting to meet with another “sister” is tough to swallow. Where are we supposed to get support from? There aren’t enough of us in any one vicinity to have our own support groups.
So I was pleased to be asked to participate in a support group that had a mix of both types of diagnoses. But as soon as I arrived, the social worker leading the group pulled me aside and began, “I’m sure your story is lovely and inspirational (she wasn’t given the story ahead of time), but there are some fragile women here who aren’t in a good place to hear your story.” Essentially, she was sure my story was too sad, too depressing, too scary, to share with these fragile women. She wanted me to modify it to make it more hopeful.
If only I could! Did she think that I want this to be my story? That I delight in making people cry when I share that I might not live to see my 25th wedding anniversary, or even my 10th? How does it make me feel to be told that, not only does a mere 7% of breast cancer-designated funds raised go to metastatic breast cancer, but that fellow breast cancer patients don’t even want to think about my existence? That I should alter my story to keep them from getting sad? What about me, getting dead?
Of course my response was solicitous, and I worked to reassure her that my story wasn’t depressing, it was primarily hopeful and uplifting. I certainly don’t do this gig to bring people down! I want to encourage and inspire, in addition to raising awareness. But her request just didn’t sit right with me. Nor do the requests I’ve heard about from other metastatic women who’ve been asked to leave support groups because they’re scaring the early stage patients.
Our stories are hard to hear, the things we go through are painful, and the future we face is grim. But pretending our ending is otherwise is to do us a disservice. Our lives matter. Please don’t sweep us under the rug or hurry quickly away from us because you prefer the message of “fighting,” “surviving,” or “beating it” to prevail. The fight is not yet won. The cure has not been found, no matter how much you tout that your efforts are “for” it. Sit uncomfortably and hear our stories, if we’re brave enough to get up there and share them. Just please don’t ask us to remain quiet or to tone down our reality just to make you feel better. Maybe you should ask what you could do to make us feel better.
First automatic response: "You people are dumb and happy about it!" Could be the protective teacher attitude; probably is! Katherine, you are (as usual) right on point, and I love this logical, truth-based, and feisty response. You keep right on doing and saying what needs to be said and done. I'd say I'll come up with suggestions, but as always, you're handling this just right! I'm, as always, proud of you.
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