Wednesday, 15 May 2013

Me, Angie, and What It Really Means for BRCA



On Tuesday I got a lot of messages, emails, and questions about this article from Angelina Jolie. I am also BRCA positive and like Jolie chose to undergo a preventative double mastectomy a little over a year ago. I was also interviewed by the National Post, and was deeply disappointed when I read the article I was a part of the following morning.

The article is extremely negative. Suggesting that genetic testing and preventative mastectomies are the options selected only by hysterical women as a result of cancer propaganda and fear mongering. And that Angelina is the queen bee leading women down this risky path. It seems to imply a disaster-like scenario where – in part because of Jolie’s celebrity status - women everywhere will want to cut off their breasts. (You can read the full article here)

I think it is safe to say that I completely disagree, and I am incredibly disappointed that my name is associated with this piece of journalism.

But what has distressed me more than anything else is that these ideas are pervasive enough they are deemed acceptable fodder for a national newspaper. That we women are all just weak, irrational, hand-wringers who are likely to think getting a double mastectomy is the same as copying Jolie's hairstyle. That in a state of complete hysteria we will react in a “counterproductive” way. And as feeble minded women it would be impossible for us to look rationally and objectively at the evidence that is presented to us.

This type of commentary feeds the worst preconceptions about women - and what's worse is that it is being perpetuated by a woman. I think the biggest issue I have with this piece is how disempowering it is. The article mutilates education into fear and a question of health into vanity.  

Fear vs. Education
I applaud Angelina for speaking out about her decision and the process. As a result of Jolie’s celebrity the impact of her story has reached millions of women and started a conversation about breast health. Even without a genetic predisposition to breast cancer women should still understand their options and know their risk. Acting proactively is our best defense against breast cancer at the moment - so whether women look into genetic testing or they just remember to book their yearly mammogram because of this - a conversation has been started.

I am sure Jolie’s revelation will not“spook” women into a hysterical trip to the OR. It is meant to inform women that there are other options. Jolie's article is aptly titled "My Medical Choice" - because that is exactly what this is. Women have a choice to go through genetic screening. A preventative double mastectomy is a choice. Screening is a choice. Knowing your risk at all is a choice. Women have a choice in terms of treatment and what they chose to do with the information once they have it.

My choice is exactly that - Mine. I, unlike the women in my family before me, will never wear the badge of honour as a Breast Cancer Survivor. Because I will never have to survive a diagnosis. I chose to act preventatively. A choice I made for myself and for my family. An empowered choice made rationally and thoughtfully with the guidance of medical professionals, not under duress or on a whim.

At the end of the day this is question of agency and empowerment. Improved screening and genetic testing only gives women more tools with which to battle this horrible disease. Increased awareness, education, and conversation can only be a positive.

Health vs. Image
Regardless of an individual’s course of action, this choice is about health. This is a woman’s body, her right, and her choice alone. The consequences of which each woman will weigh with all of strength, courage, and grace she possesses. To suggest that a woman would make a frenzied decision about something like this is insulting.

There is no doubt that choosing to have a preventative double mastectomy has an effect on your body. I have written at length about my own journey to accept the physical changes I willingly made. It was long. It was hard. Tears were shed. An internal struggle raged. But when I woke up and I looked at my body in the mirror I loved what I saw. Like Jolie, I choose health and a long happy life, and I have never once second guessed my decision to put my life first.

I wear these scars and silicone breasts with pride, and I am no less a woman because of it. My body is beautiful because it is strong and above all because it is healthy. Having a woman like Angelina Jolie stand up and say that “health really does trump beauty” sends a very powerful message.

Perhaps it is possible for a woman to offer the world intellect, strength, kindness, and character rather than merely breasts, bedroom eyes, and sexuality. And maybe if we lived in a world that actually valued woman rather than one that objectifies them, making these kinds of choices would not be deemed so difficult.

This is a personal choice about health. The politicization of cancer screening, complicated as it is by our social treatment of women’s bodies has no place. I stand together with Angelina Jolie and all women, who choose to take control of their bodies and their health.

Love Your Favourite Darwinian Fail,
Krysten

49 comments:

  1. Keep your head up. It's your body, your choice. You are a brave woman for undergoing that type of major surgery. Please take care.

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  2. YOU ARE ALL BRAVE & STRONG WOMEN!!! Put them in your shoes & let's see what happens - screw them!

    I am sorry for you!

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  3. You're amazing, Krysten!! Sending TONS of love your way for being one of the strongest women I know!! xoxo

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  4. They definitely twisted your words to not sound like you or your position at all. Shame on them. Keep sharing your true voice!

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  5. Not only does health trump beauty, it IS what makes you beautiful. Think of women past 50 who are considered beautiful, such as Helen Mirren, who looks amazing in her swimsuit. She is healthy and therefore is radiant. I'd rather be radiant without breasts than radioactive with unhealthy cancer-carrying tissue. You tell 'em. P.S. I haven't actually viewed your breasts (and feel no need to), but the parts of you I HAVE seen are super gorgeous. By all standards.

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  6. Wow, I can't believe the spin they put on that article and your statements. I also can't believe it was written by a woman.

    This is the perfect rebuttal-- we are with you girl. Stay as strong as you always do!

    xo

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  7. So sorry that the NP made such a hash of an important topic, and that your name was included in it!

    I have experienced a double prophylactic mastectomy, radiation and reconstruction vicariously as I've watched my younger sister go through hell over the past 3 years (mis-diagnosis, reconstruction before radiation, infection, sepsis, emergency surgery and new implants) and have nothing but love and respect for the decision that she, you and Angelina made. At the end of the day it's about choosing life!

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  8. Great post! Please continue to inspire...

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  9. You, my friend, are amazing, beautiful and strong. It is a personal choice and choice is one of the most powerful things that we have. I'm so sorry that they twisted your words around like that. xox

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  10. You're incredible! BRAVEHEART you are Braveheart through and through!

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  11. I'm sorry you had to be associated with this but am proud that you're standing up to irresponsible journalism likely written by someone who will never in their lifetime, face the decision that you did. It's very disappointing that a society that preaches empowerment to women would then turn around and tear them down for being empowered enough to be proactive with their health.

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  12. Hi fellow GGS Team Rad Ambassador!

    I think this piece is great -- an articulate, well written rebuttal! What's most disappointing to me is not that the NP article was written with a sort of derogatory tone towards women and their capability to make educated medical decisions... but that it was written BY A WOMAN nonetheless. I agree with you 100% that it's a very personal choice that you and only you could make - your body, your health - and that Angelina Jolie getting the procedure done and speaking out about it just starts the conversation, and if anything, makes getting a preventative double mastectomy less of a foreign concept to people.

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  13. Beautifully written. I admire you so much for your courage and convictions. I think that Angelina Jolie's actions won't cause panic, but show women that there are choices with our health.

    Thank you so much for writing this.

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  14. Beautiful post. I'm sorry that you were used in such a negative way.

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  15. I can't even bring myself to read their awful words - I know too many women that have had to make the same choice as you and I applaud you for sharing your journey. You are an inspiration.

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  16. The article they wrote is so awful. This is a beautiful rebuttal, and you are an amazing, healthy and resilient women who made the best choice for you! I'm sorry their "journalism" tainted your true message.

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  17. I've told you a million times before and I will say it again. Inspirational. Beautiful. STRONG!

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  18. Screw the negative and just stay your amazing positive self! Love you girl!!

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  19. Sage points, here. It is insane to me that people use this as a dividing issue! You did a great job.

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  20. This post is fantastic! Knowing that breast cancer runs in my family has always concerned me. Would I have preventative surgery? I don't know. But understanding both sides of the situation helps tremendously! You continue to be an inspiration to all! :)

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  21. I loved hearing the news on Angie and have a new found respect for her - I've forgiven her for taking Brad away ;)

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  22. You are such an inspiring and brave woman. This rebuttal brings tears to my eyes. Keep your head high, you lovely lady! xo

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  23. Well said Krysten!

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  24. i didn't know this about angelina! wow. damn the national post, we women have to do what is right for OUR bodies and OUR health xox very well written post btw :)

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  25. This is such an emotional issue for me, my sister-in-law has just passed away due to cystic fibrosis leaving behind her husband and two little boys. She would've done anything medically to still be here for them. People are ignorant and unless they have seen it firsthand they have no idea of the devastation caused by the death of a loved one taken so tragically. Great article and strength to you Krysten.

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  26. Darling, you are beautiful inside and out and I LOVE that you wrote this.

    P.S. I also LOVE your blog update! And if it has been in place for awhile, oopsie on me not finding it sooner!

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  27. Wow. Moving. Good for you for writing a rebuttal as well.
    Anything we do is our own choice and it's up to us to get all the required info to make empowered choices for ourselves. Thank you for continuing to share your journey

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  28. Good for you for speaking up, lady. And so beautifully written. xo

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  29. Great rebuttal! It's exactly what I thought when I first read the NP article. They suck, and you rock. Stay strong and keep running and writing!

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  30. I don't know why society has this obsession with constantly bringing women down. Great post!!!

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  31. This was a wonderfully written post. It is so admirable how you put yourself out there and talk about the things you've had to go through. You are AMAZING.

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  32. Fantastic rebuttal. I completely agree- it's about choice, and everyone who knows you, knows that's what you're about.

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  33. The biggest thing is awareness... I honestly have learned so much about this from you. I think positive can come as a result of sharing knowledge and with Angelina bringing it to the forefront and responsible Doctors being involved, it's a good thing. I don't really see a scenario where women start having this surgery AND doctor's allow them to, unless it is necessary. There is always a choice... and the only way to make a reasonable and responsible choice is to be educated about ALL possibilities.

    I'm lucky to know you and fortunate to say you are my friend (and it's true because we met and you and I ran in tutus so that makes us like besties). Keep doing your thing K. Those that know you and your story got your back.

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  34. Very well written. You make such great points. I hate that someone took your words and twisted them all around!

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  35. Your rebuttal was so well-written. It was completely horrid to see how the article twisted your words and placed them in an article that came across as "trendifying" a double mastectomy when in fact it's a difficult and painful decision to make.
    So strong of you to share such a personal decision with all the world. You deserve nothing but praise for that decision, because through your voice, you've no doubt helped so many other women.

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  36. You are amazing. I'm so sorry the article was negative. I have also learned so much from you and think you are so strong. The most important thing is awareness and education like you said. thanks for sharing your thoughts!

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  37. you are a rock star and I am so sorry the article was so negative. I used to hate being interviewed when I coached high school sports b/c they always got it wrong and put words in my mouth!

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  38. THANK YOU! This needed saying and you have done it well!

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  39. Beautifully written. Thank you for sharing your thoughts! I completely agree. It's all about choice. I have a history of breast cancer in my family and my doctor asked if I wanted to have that test done. I thought long and hard about it and opted not to because I didn't think I could handle the answer if it was a positive test. I chose instead to focus on continuing to live a healthy and active lifestyle and letting the chips fall where they may. I applaud you for going through with that and making the decision that you did. It takes courage.

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  40. Thank you for writing this! I think if these types of cancers are not ones you see then it is so easy to judge, and to make the assumption that women are stupid and will "lop of their breasts" to be like Angelina. After hearing Angelina's surgery, my husband and I discussed at length what I would do. My mom had ovarian cancer and had a hysterectomy when I was very young, so that fear that I might one day have that is very present. I am very thorough with all my doctors, and if at any moment they said that my best option would be removal, I would not hesitate. My health is beautiful, knowledge is power. Rock on Krysten!

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  41. Kudos to you for writing this. In hearing a lot of the negative conversations about double mastectomies, the one thing that always seems to be implied is "breast cancer isn't so bad." I can kind of see where that misconception comes from - I know several people who've survived breast cancer, and none who've died. The cancer survival rate goes up a little every year - so what's the big deal?

    I think people forget how much having cancer SUCKS - literally sucks the life out of you. Cancer survivors are admired because they SURVIVED CANCER, and surviving cancer is a horrible experience that I would not wish on anyone.

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  42. This is so well written. I think you really articulate the heart of this issue... I think confusion, issues with gender, body comfort/discomfort, and empowerment all factor into and shape this debate. Thank you for expressing a healthy process for making this decision and respect for the processes of others!

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  43. Your strength is inspiring! Also you are an incredibly talented writer. Screw the NP, if I were in your position I would make the exact same decision. You're amazing Krysten!

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