Oh geez, here I’m about to go again.
I haven’t previously attend the #BRCA chat on Twitter. It’s at 9pm on Thursdays and that is just too late for this mama (usually that’s the time I’m falling asleep while watching Project Runway). But last night I could not resist since I knew, from the BRCA Commons Facebook Group, there was a chance that Melissa Etheridge might show up. Now, I don’t really follow what ME has to say about BRCA the same way I obsessively follow Angelina Jolie. I’m doing a research project on AJ, so I kind of have to be following what she says and what’s said about her. To be honest, I heard what ME said about AJ after her prophylactic surgery (that her choice was “not brave” and in fact “fearful) and basically I stopped listening after that. So I’m not incredibly informed about her views about BRCA. It doesn’t seem like they have evolved much since then. My cousin just told me that in a very recent AARP article, ME said that her breast cancer “was of my own doing, and I take responsibility, ” and, “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on or off. I turned my gene on with my very poor diet.”
Of course, those participating in the #BRCA chat don’t take this type of comment lightly, although they treated her with so much restraint and respect when she deserved such a smack down for that bullshit – BRAVO community! I’m proud of us.
My suspicion is that the common response to these comments is that ME is simply misinformed. We know (from science) that genes are not turned on and off. Our community is concerned that ME is spreading this misinformation. I’m guessing that another common response is that ME’s comments are insulting. She insinuates that those of us who have been diagnosed with cancer are at fault! I ate french fries and missed a few days at the gym, therefore I gave myself cancer. I deserved it. Wow – thanks ME. Because I didn’t feel badly enough. I know the main response to ME is that she is using her celebratory platform in the worst way – she could be doing so much good for the BRCA+ community and instead she is misleading people.
One response that I don’t really see has to do with guilt. Guilt is a major reality in the life of a previvor; we feel it in a lot of ways. We feel guilty that someone else had to suffer or even die from cancer so that we could learn that there is a mutation in our family. We feel guilty that family and friends have to take care of us while we recover from surgeries. We feel guilty that we might have passed a mutation down to our own children before we knew of the mutation (my father feels this guilt every day, regardless of how often I tell him that he shouldn’t). I know I feel a lot of guilt – I got pregnant and had my child even knowing of my BRCA2 mutation and my husband’s BRCA1 mutation. But at least I know one thing for sure: I got DCIS because of my genes – I had a 50% chance of getting that gene mutation, and I just got unlucky. It had nothing to do with what I ate, nothing to do with how I treated my body. I also have Rheumatoid Arthritis, and I’ve asked my rheumatologist that question too – did I do this to myself? Nope. Just part of your physiology. Could’ve been a virus, could be genetic. No one knows. But it is not my fault. And it is not ME’s fault either.
What’s the major take away here? I hope Melissa Etheridge has a good therapist because that guilt she must carry – thinking she gave herself cancer; it was her “own doing” – that must be an unbearable weight. I am so glad that the previvor community knows better than to listen to her crap – the last thing we need to be doing is blaming ourselves for losing the 50/50 chance.
More importantly, I remembered that I love communicating with the #BRCA community. I will definitely be making the chat a more regular part of my schedule. It’s such a great community of wise, generous, humorous, and insightful people, and it’s worth the time to talk to them – even if I have to DVR Project Runway.