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By Kayla Giacin
Monday, September 23, 2013

 “I like the design on you head, did your barber do that?”

“Oh, is that why you’re so weird?”

“Why do you look like that?”

These are all things brain tumor survivors have actually heard from people they know and strangers alike!

It seems hard to believe, but when  I asked some of my survivor friends about what kind of things have been said to them that might’ve made them cringe or say, “Why in the world would anyone ask me that?” these are some of the things that they told me.

Besides the things mentioned above, one survivor said that he doesn’t like it when other people ask him to see his scars.  Another said that he doesn’t like it when people are intolerant of his challenges and ask, “What’s wrong with you?”  even after he explains what he has gone through.

One survivor pointed out that while someone saying, “You’re lucky, things could’ve been a lot worse!” is a great way to look at things, it doesn’t mean that she doesn’t deserve to feel frustrated and that it feels like this is a person’s “go to” when they don’t know what else to say.

Several survivors even said that friends have asked them what the benefits of having cancer are or said that they were jealous that they had brain cancer because they got to meet celebrities and go to camp.

As you can imagine, this is a very tricky topic to handle.  On one hand, some things said to someone who has a brain tumor can be insensitive or downright insulting.  On the other hand, if someone is asking questions, it probably means that they’re interested in finding out more, even if it’s not done in the most tactful way.

The truth is that for many survivors and their families, talking about a brain tumor is just a part of everyday life, but for someone who has never experienced this; it can be a very uncomfortable subject and leaves the person not knowing what to say.  I’m sure we can all relate to the idea of being so unsure about a certain topic that we blurt out the worst possible comment and are actually very embarrassed that we said it!

CBTF’s AYA survivor group has discussed this topic many times and the best solution seems to be to go with your comfort level. 

Some people are more comfortable with humor and making light of a situation, so when asked why they have a scar on their head, they might say, “I got in a nasty fight, but you should see the other guy!”, or as one survivor said, he likes to tell people that he’s crazy.

Another option is to simply say, “That’s a very personal question/comment and I’m not comfortable talking about it.”

Of course, if they’re comfortable, they can answer the question directly or explain the reason behind the comment and see it as an opportunity to educate others and spread awareness.

No matter which tactic a survivor decides to take, I’ve come to realize that handling these situations is uncomfortable for EVERYONE and even an insulting comment isn’t necessarily meant to sound that way. 

CBTF’s hope is that by working with survivors, we can help to alleviate some of these awkward conversations by equipping others with the knowledge of how to deal with the non-brain tumor population, thereby shedding some light on this widely misunderstood topic.

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