Monday, February 11, 2013

What Not To Say To A Previvor

  A common annoyance that everyone has to deal with...unsolicited advice. It has happened to the best of us. You tell someone something about your life, and they offer their advice, thinking that what they have to tell you will automatically make you have some sort of revelation. Though I don't think people intend to be condescending or abrasive on most occasions, offering unsolicited advice can tend to come off a bit arrogant in most cases. I have had my fair share of "advice" given. Once you get pregnant and have kids, the unsolicited advice floodgates seem to open, like you put an "I'm an idiot and need you to tell me how to raise my children" sign on your forehead. So far, most of the "advice" given to me was after I had my babies. Often people feel like they are trying to be helpful, but can easily step over boundaries, especially when it comes to parenting.
  I thought it was bad when I had the kids. Often, I would find some advice downright rude. Usually I keep my mouth shut, because if someone else had kids already, I am willing to sit and listen...sometimes advice is actually helpful. When it comes to my kids, I'll listen to other "successful" parents offer sound advice. 

  Recently (in this new journey), people have offered me a lot of advice. Not that I think most people are unworthy of offering me advice, but unless you have personally dealt with cancer, or had someone close to you die because of it...chances are, I'll politely listen to what you have to say, and I'll continue on with my day. Sometimes, I am surprised by the wonderful advice that can be given, and other times I find myself mentally wanting to strangle the advisor.  

  I spoke with some of the ladies in one of my support groups on Facebook, Young Previvors, and asked them to help me out with this blog post. These women get where I am coming from, and we often have dealt with the same trials and tribulations. Some of what I am going to say has been said directly to myself, or one of my other genetically predisposed friends. These have not been fabricated...unfortunately, they have all been said to one of us. 

What Not To Say To A Previvor: 

  1. "Are you still doing that thing?"-   It is called a "prophylactic bilateral mastectomy". That "thing" is a major surgery that I am going to be having so that one day I don't get breast cancer, and possibly die from it. That "thing", had it been given to my mother as an option, would have saved her life, just as it might save mine. 
  2. "Why are you in such a hurry?"-   The last I checked, breast cancer didn't have a set time. Women as young as twenty can be diagnosed with breast cancer. If you had a genetic mutation that caused three generations of women in your family to pass away, each younger than the previous, how long would you wait? 
  3. "But you don't even have cancer"-  Correct, that is exactly our point. Having a PBM is our way of fighting the possibility of ever even getting breast cancer. Why would you sit and wait to get breast cancer, if you knew there was something you could do to ensure that you wouldn't get it? 
  4. "I'm shocked you're actually going through with it"-  Are you? Or would you be more shocked if I waited to get breast cancer and did nothing about it? I am not sure what is "shocking" about it. I am not attaching a horn to my forehead, tattooing my face purple, piercing my, that would be considered "shocking", no?
  5. "At least you get a nice new pair of boobs"- I think this may be a joke only women that have had reconstruction after a mastectomy can make. When someone, being completely serious, says this to one of us, it's an automatic "smack in the forehead" feeling. Have you ever seen what a mastectomy looks like? Some women are fortunate, they end up with boobs that look great. Most of the time, there are complications. Sometimes you get necrosis, an implant will tilt, you may reject an implant all together, your scars can look more terrifying than a Freddy Kruegar wound, you can be in terrible pain for months (the list really goes on). So, you may think it's easy...just a quick surgery, and "bam"...Pamela Anderson, but it's not quite that simple. Think before you speak. works like a charm! 
  6. "What if you want more kids/ Don't you want to breastfeed?"- Just because you have a PBM doesn't mean you cannot have kids. As a matter of fact, more power to you. By reducing the risk of breast cancer, you offer your children a much better life...because you won't have to leave them before anyone is ready. Personally, I breastfed both of my babies, but there are women who haven't had children yet that undergo this surgery. Of course people want to have the choice to nurse their children. What is more important though, breastfeeding a baby or giving them formula and being around to see them grow up? 
  7. Saying nothing at all- Realistically, we all understand, sometimes it isn't easy for people to open up. Often people do not know what to say to us, and it can be difficult to find the right words to say, but please...say something. Saying nothing can be just as hurtful if not more hurtful than saying something silly. Say something, anything. Even if you just say, "How are you? Are you doing okay? Can I help with anything?", it would be greatly appreciated and embraced. If you love us, or care about us, just say something for goodness sakes. 
  8. " I know what you're going through, because I have had a breast augmentation"- I wish this was as easy as a simple "boob job". A prophylactic bilateral mastectomy is an entire different surgery. Again, google comes in handy. Personally, it will take me months to even get to the point that I can have implants. In laymen's terms, my breasts will be cut open, scraped, nipples removed, possible lymph node removal, surgical drains, months of filling up expanders, an exchange surgery, nipple reconstruction, nipple tattooing, etc. Are you really going to compare this to breast augmentation?
  9. "Why don't you just diet and exercise?"- Lance Armstrong, Sheryl Crow, Kylie Minogue, Edie Falco, Robin Roberts, Christina Applegate, Cynthia Nixon, Giuliana Rancic....just to name a few. These "celebs" surely knew how to eat healthy and exercise, and yet, they all still got cancer. Sorry to say, eating healthy and exercising can only "reduce" the chances of getting cancer. If you're told by a geneticist that you have from 50-90% chance of getting breast cancer, there is no diet in the world that you can adhere to that will eliminate your chances of cancer all together. 
  10. "Are you sure you're making the right choice?" - Most of us didn't wake up one morning and decide, "oh yes, today is the day I want to go in and have my breasts removed". The decision to undergo a PBM is one that many of us have thought about for years. Many of us have spent countless hours in front of our computers researching. We have discussed it with family, we have tossed and turned on those sleepless nights thinking about it, we have researched doctors, reviewed photos...this is not a decision that one makes overnight. Of course we know what we are doing, honesty, most of us don't stop thinking about it until it's over and we can breathe a sigh of relief. 
  11. "Why don't you wait until you get breast cancer and then deal with it?"- I am not even sure this one dignifies a response. Yes, sure, I'll just go ahead and get get a disease that could possibly kill me. For the record, I have also noticed people seem to think breast cancer is "a better cancer to get". There isn't a single cancer that is "okay" to get. We aren't talking about the flu here...we are talking about a disease that kills women everyday. 
To be continued.... (as this journey goes on, surely I will hear many more)

I would like to take the time to thank my Young Previvor ladies. Without you guys, I would feel like I was stuck in a never ending maze. I genuinely feel at home when I click into our group and I am so fortunate to have a group of women who are as determined as I am. Thank you all, from the bottom of my heart. 

To those unaware of "Young Previvors", please take the time to check us out on Facebook. Recently, Facebook deleted our group page without warning. The founder of YP has been working so hard to get our group back up an running, or even get facebook to acknowledge that deleting our page was absolutely unnecessary. The more "likes"YP gets , the better off we are, especially in terms of awareness.

Disclaimer: It is not my intention to deter people from asking questions or talking to a previvor. This post was meant to be lighthearted (I wish I had my husbands sense of humor...often my jokes come off a bit dry) and fun. I only ask that you think about what you say, before you say it, because some questions and comments can be hurtful and cruel. Consider yourself in a previvors shoes before you make the "if it were me comments". I am an open book and love to share my journey with everyone that is willing to listen, so please do not stop asking questions or making comments. I still love opinions and often learn new things from people everyday. 

1 comment:

  1. My favorite is "are you done now". Because the surgery, physical therapy, tests, treatments are so Inconvenient for THEM.