At first, I was a little apprehensive to make this list for numerous reasons such as coming across whiny or even sounding a bit bitchy. But you know what? I don’t care because I feel that a list like this should be out here on the Internet. And if there already is one, then oh well, here’s another one from my point of view!
What NOT to say or do to someone with the BRCA 2 mutation (top 5):
Don’t show me pity.
This probably makes my blood boil. Why? Because people make me feel as if I have the word “dead” stamped right on my forehead, which is completely inaccurate. The best thing about finding out about the mutation is that now I can do something about it; what sucks is that it will always be there. I know pity may be the first thing someone wants to show because they don’t understand what’s going on, but don’t do it. Honestly.
Don’t say anything stupid.
So, I know this may seem pretty vague but what I’m trying to get at is… be considerate. I have had many people say a TON of stupid things to me, and that’s just between my family and friends. I have heard things such as “You won’t be able to breast feed you children” when I was talking about preventative surgery or someone jokingly saying “You’ll be empty like (insert name here)” when I was talking about my ovaries and tubes. Most of the things are inconsiderate and stupid. I’m not telling people to think before they talk around me but if you piss me off, this is why.
Don’t give me your two cents.
If you don’t understand what I’m going through or if I didn’t ask you for your opinion, don’t give it because it’s not wanted or appreciated. In all honesty, your opinion is more hurtful than helpful. I have had some people say to me that my original plan of when I wanted to get my preventative surgery was “a bad idea” because, during that time, no one will hire me and, apparently, it will be harder to keep or find a relationship. Again…if you aren’t in my situation, don’t say absurd things like that because those opinions are ridiculously untrue.
Don’t say everything will be alright.
Nobody knows if everything is going to be alright. If I don’t know if my own health is going to be alright, you sure the hell don’t. I know this saying is used so that people can stay positive but unfortunately, it also persuades people to forget about the negative side of things. Especially concerning health, you have to be realistic and realize that everything. may. not. be. alright.
Please don’t act like prayers make everything better.
I feel like this is the hardest “don’t” that I could ever come up with because sooooo many people do this. Personally, and I’ve felt this way for a long time, I don’t think praying to God makes things better, especially when the situation concerns medical issues. I know it makes the person praying feel better, but I feel like that’s about it; the situation at hands stays the same. I’m still mutated and the mutation may or may not “turn on.” I know people say that life’s a gamble, but in all reality, my life is now, officially, a gamble and if God can’t fix, then neither can prayer.
Now, for what to say or do, I have come up with three (yes, three) simple things:
So this will help you from saying anything stupid (somewhat) or showing pity. Questions are always good. Don’t think someone would be offended. Questions are a way for the affected person to deal with their illness, or that’s how I thought about them. They forced me to be more open about my mutation and willing to educate people who didn’t know as much as I did. By asking questions, it shows that you’re curious, concerned, and willing to understand what’s wrong.
I don’t feel like I have to put much here because it’s always (and I mean ALWAYS) good to listen to a friend or loved one. If I feel overwhelmed with information or just need to talk about anything (surgeries, tests, the future, etc), please, just listen, even if you don’t understand. Listening goes a long way and is extremely appreciated.
Just be there, plan and simple. Whether or not you agree with my decisions on how I want to tackle my mutation, just support me. Like listening and asking questions, support shows that you care and that’s all I need.
Well, that’s my do and don’t list! I know there may be things that you may disagree with, but, this is how I feel based on my experience so far… Until next time!