The sh*t nobody actually says

There’s quite a few things we all think… but seldom say out loud in fear of being insensitive to someone’s thoughts or feelings.

Well I call it being honest, and SOOOOOOMETIMES (as described below)
it’s just too hard not too!

Living with any illness, most of us rely on our positivity and ‘strength’, it’s all we see hear and talk about. We are human however, and not without some cynicism, sarcastic thoughts, and realist views.

I am known to be an incredibly upbeat person, bubbly, and overall just really happy. However, when you inevitably live each day with an impending doom in the back of your mind of what’s coming next…

 you just wanna say sh*t that nobody actually says sometimes


I will start by saying…please do not tell me to be positive, I AM POSITIVE. Yes, I appreciate the sentiment of what you’re saying, but if you ask me how I am and I feel like absolute shit, I’m just being honest, not negative.

Don’t pity me…just be there for me! Whenever you give me the “I feel so sorry for you” eyes… You know them? *facepalm* please just say, “I wish you didn’t have to go through this” or something along those lines.

There’s nothing worse than hearing…

“You will be fine!”, or “You’ll beat this!”

Hold on, allow me a minute to get off my unicorn and look into your crystal ball while we eat sunshine in denial land.
Denial hurts me more than it helps you, let’s accept this for what it is and take it one step at a time. I am certainly doing my part, but I am far from fine, seriously, think about what you just said.

Please take the time… to understand my complicated specific disease before you force upon me things you decided I should be doing to cure myself. These things only remind me that none of those things are an option for me, believe me, I’ve asked.
Don’t be shy, just ask me if you’re curious about options, or anything at all for that matter. You don’t have to fix me, I have specialists for that, ones that I worked very hard to find to treat my rare illness.

If anyone ever tells me… I can cure my pheochromocytoma cancer with something that I can get in aisle six at the grocery store, just know I am beating you with that same item in my mind.
Eating kale will NOT cure my cancer, I really love kale though.

I think we can also… cross off any Facebook cure, internet cure, 60 second magical potion, doctor google isn’t going to fix me and the fact that you think hitting ‘share’ and ‘like’ will make my cancer go away… is not only insulting to me and everyone suffering or dying with these diseases, but also puts us in an incredibly uncomfortable spot when having to seriously answer you.

IMG_7396
KALE

I think it’s pretty safe to say… we don’t want to match our outsides to our insides. So let’s not assume that because we look fab on the outside – that we are suddenly all better.

If a cancer patient does not lose their hair… it doesn’t mean they are ‘lucky’, or less sick than someone who does, it just means their treatment impacts them differently. It doesn’t mean they are in remission, and it’s a sensitive area for most, so just don’t go there. On that note, how about just not asking someone if they’re going to lose their hair, how am I supposed to know if my hair is going to fall out? Why are we talking about this anyways?! Is this supposed to be making me feel better?


With all of that being said… I remind you that I don’t always have my sassy pants on. I appreciate every single supportive statement and positive energy that is sent my way, everyone however needs to vent a little now and then, even this girl! If you have done any of the above, we all know you mean well, we still love you and know you care 😉

Pheo VS Fabulous ❤

3 thoughts on “The sh*t nobody actually says

  1. Yeah you!!! If one more person tells me how to cure this f’ng disease because it worked for someone with something else, I may spit in their direction! I love, love, love your blog. This is fantastic and I can’t wait to show my 15 year daughter who has gone through one major surgery to remove her first pheo, and has just tested positive (wrong word certainly) for more trouble. I know people mean well, but for real, if there was ANYTHING in my power to do to take away her pain and suffering, I would be doing it already. We lost her father to this shit two years ago, and here we go again. I just had bracelets made for family and friends to wear to support her, and hopefully it will continue to bring awareness to this rare and crazy diagnosis.
    You are an inspiration! Thank you!! Lisa C. Nashua NH

    Liked by 1 person

    • Lisa, YOU are an inspiration, incredibly strong and your daughter is lucky to have best advovate possible watching her back! I am so happy my blog is allowing people including yourself take a little something from it. I truly wish your daughter has a team of doctors you trust, that will find something her body agrees with for the best treatment outcome possible. Thank you for sharing with me ❤

      Like

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