Support System

I remember after I got my diagnosis I told my husband first, then my parents and then my in laws.  For a week or so I kept it quiet and I don’t know why.  Maybe I didn’t want to be vulnerable or put my problems on anyone or maybe I didn’t want to tell everyone that there was something wrong with me.  But one day, I asked myself, “Why am I carrying this burden alone?” and I decided to go “Facebook public” because, you know, nothing is ever official unless it is on Facebook.  I was nervous, I’ll admit.  I am in a support group of about 8,000 women going through the same thing I am (If you are a BRCA patient, search for BRCA Sisterhood on Facebook. It is a wealth of resources and support) and it is appalling the responses some of them got.  I didn’t realize people could be so heartless and ignorant.  But, I wrote up a little blurb about what was going on and put it out there.  Up to that point, I had stayed pretty cool and collected about the whole thing but seeing the HUNDREDS of comments and text messages come in just made me cry like a baby.  I feel so lucky that every person in my life has been so amazing in rising to the occasion with offering help in any way or just telling me that I was doing the right thing.  So to all of you, thank you.  I appreciate it more than you know.

Now, if you are here and you are a friend/family member of a BRCA patient, I want you to read this next section carefully.  These are things you should NEVER say, especially to those going through surgery to reduce their risk.  It seems unbelievable but these are things I have heard said to people.

“You are playing God by doing this.”  Well, with that logic, vaccines, antibiotics, and Advil can be playing God too.  Wrong.

“You aren’t even sick yet. Why not wait until you have to do the surgery when you have cancer?”  Are you serious?  Cancer can kill you.  And treating it is just awful, both physically and mentally.  Go to an oncology ward and ask a person hooked up to a chemo drip if they would’ve taken measures to prevent this disease.  Put it this way, if you are getting ready to board a flight (Hopefully it’s not United!) and the flight attendant comes on over the PA and says “Attention passengers, we have just been informed that there is an 87% chance the flight will crash due to the pilot not being capable of flying.” would you say “Well, it hasn’t crashed yet, let’s just wait until there’s a problem.” or would you say “Hell no, put me on a plane with a capable pilot that only has a 1% chance of crashing”?  That’s what I thought.

“Why are you mutilating your body?”  Similar to the last comment, this one makes me want to bang my head against a wall.

“Why don’t you try a holistic approach and fight this with diet and exercise?”  Because this isn’t environmental cancer we are talking about!  You can eat all the kale and coconut oil you want, you will still have this faulty gene.

“Oh I got a boob job too!”  Bless your heart.  Please don’t compare your elective, outpatient, cosmetic procedure to major, medically necessary surgery we never asked for in the first place.

“I hope you know there’s a chance you passed this to your kids.” Trust me, we know.  We don’t need it rubbed in our face.

Sadly, I could go on, but you get the point.  If a man (yup, guys can have the mutation too!) or woman in your life comes to you and gives you the news that they carry the mutation, just repeat after me:  “I am so sorry to hear that.  What can I do to support you through this process?”  Easy as that!

I am so thankful I never heard any of those comments.  I am so humbled to see that I have a whole army behind me as I prepare for these surgeries.  That’s the greatest gift I could ever receive. XOXO

 

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