在学习家谱上的畸变时，我是一个老年人：2005年，当我第一次获得基因测试结果并发现我携带BRCA1基因变体时。
当时，我的儿子只有一岁，在医疗预约期间，我的医疗保健提供者会提出建议，并加上警告：“好吧，您是BRCA。” Actually, I’m Lambeth, I wanted to scream.
虽然那些发现的早期感觉就像是一辈子，但我发现人们在讨论我一生的事实时仍然变得尴尬，即使安吉丽娜·朱莉（Angelina Jolie）帮助揭示了携带的含义高风险基因变量t。
老实说，我不敢相信遗传变异仍然存在太多的困惑。就在最近的开始COVID-19 pandemic, two friends told me I’d likely get to the front of the vaccination line due to my “medical history.” That made me feel like they weren’t even listening to me when I discussed the prophylactic part of my process — that I had surgeries to remove my ovaries,fallopian tubes, and breasts as a brave and preventive measure, not because I was ever sick.
但是，最糟糕的是，当朋友告诉您新的时候乳腺癌在他们的家庭中诊断，然后说：“好吧，至少我们一个人都不是BRCA”，好像这否定了自己的乳房cancer risk。It only serves to make a person with a high-risk feel even worse. Plus, hello: BRCA variants are hardly the only risk factor in breast cancer.
不幸的是，我并不孤单，因为有些人不知道我们走了多远或其他多少celebrities (Christina Applegate and Sharon Osbourne, to name two) have shared their personal stories.
To prove my point, I reached out to some incredible women who carry a high breast cancer risk.
有关的：How to Talk to Family and Friends About Hereditary Breast Cancer Risk
1. Don’t Compare a Mastectomy to a Cosmetic Surgery
Take Gabrielle Fishman. Her close friends haven’t exactly said the right things to her as she counts down the days until hermastectomy其次是下个月的Diep（深层下腹穿孔器）重建手术。
“我关心的两个人说，‘哦！她说：“这就像一个免费的肚子和胸部工作。”“我只认为'不，那是不正确的。’”
2。不要淡化某人正在经历的事情
在2010年，在世袭癌症社区的倡导者简·赫尔曼（Jane E.
“我永远不会忘记她怎么说，‘这没什么大不了的。您只需要更多乳房X线照片every year,’” she recalls.
3. Avoid Jumping to Conclusions
Stacey M. Eisler说，真正令人沮丧的是，当人们对您的整体健康状况得出结论时。
“It really hurts when people you consider close friends or family refer to you as someone who went through surgeries because, in their minds, they think you had breast or卵巢癌when, in fact, my surgeries were all prophylactic to reduce the risk of ever getting these cancers,” she says. “For some reason these people view me as a cancer survivor, which I never want to take credit for.”
最终，我们肯定会肯定一件事：我们很强大，我们很强大，我们坚强，我们没有人为此感到难过。
4. Create Space Instead of Taking Up Space
Tremayne Cunningham说：“最近经历了我的手术，当我与他们分享我的处境时，有多少人变得令人激动。”“无论我对此有多大的意义，他们的举止好像我说我有90天的生活。有些甚至哭了，这使我变得情绪激动。我发现自己安慰他们！”
Cunningham’s message is clear — and powerful — and speaks for every previvor who has ever been upset about something that was said in an offhand or even offensive way.
“This is not a death sentence, so please uplift BRCA previvors with praise for being brave,” she says. “Don’t cry tears that we may not have cried ourselves. We will come out the other side stronger than ever. Think of us as caterpillars transforming into butterflies. I myself am a phoenix.”
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