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What Teen Survivors Want To Tell You

By Stacia Wagner and Wade Iwata
Wednesday, January 29, 2014
Carolyn, Morgan, and Serena
Carolyn, Morgan, and Serena

Earlier this week we held a teen brain tumor survivor meeting in Washington D.C.  In the group, we talked about a recent blog post on brainline.org that provided tips from a person who had experienced a traumatic brain injury.  We then asked the participants to work together to come up with advice they would give to other people about the everyday experiences they face.  Below are the questions that were asked and the responses and tips in the participants own words.   Additional comments are noted by an asterisk.

What would you want to tell your friends and family about how fatigue impacts your life?

1)     I need to take a break because my brain cannot work that long.  I can’t go nonstop for this long

2)     Thinking is exhausting

3)     I need to go to bed, tired all the time.  Zone out a lot. 

*Fatigue is real and is a late effect for many pediatric brain tumor survivors

Many people view the recovery time from treatments as something that should be quick.  What would you tell others about your recovery from your treatments?

1)     I don’t see day-to-day results, but measure them in years. 

2)     People expect things to be back to normal for me by now and things are not quite there

*Many people use the phrase the “new normal”.  Treatment ending does not mean a return to life as it was.  There will be visible and invisible changes forever.

What advice would you give people who also are going through a difficult time?

1)     Sometimes you don’t need to stick out all the way, but just a little

2)     Its okay to share part of your story

3)     Its sometimes a lot easier for people to understand the whole picture if they understand the basics

How do you deal with loud environments and group discussions?

1)     It can feel overwhelming and I need to ask people to stop talking

2)     Walk away

*Attention and hearing are often impacted.  Loud environments, multiple conversations, and extreme chaos may be problematic for survivors.

Sometimes brain tumor survivors say something that can be offensive to others without thinking about what they are saying, a lack of filter of sorts.  What would you tell people who may be around a survivor who has a lack of filter?

1)     Know I didn’t mean to say it

2)     Just ignore it.

3)     Have thick skin, it wasn’t personal

4)     I am sorry if I hurt your feelings sometimes, I don’t always have control over what I say, but remember you’re my friend and I like you.

 

Teen survivors often complain of being spoken to as if they are a young child.  What would you tell someone who is talking to you like that?

1)     Don’t even talk to me that way

2)     I look a lot younger than I am

3)     You’re in my bubble. Respect my age.

In wrap up, we asked them what they wanted to say to hospital staff, teachers, and parents.  Here are their thoughts.

Advice for hospital staff

1)     Stop being “hospital happy” all the time

2)     Talk to us like we are human beings

3)     Listen to the patient (Patient First)

4)     Patient needs to be able to trust you

Advice for teachers

1)     Don’t be perky

2)     Follow my IEP

3)     Be involved with the student, make it real - a real relationship

4)     Respect the student, they will respect you

Advice for parents

1)     You were teenagers once too

2)     Trust that we know what we can and cannot do

3)     People need to know that we will not make mistakes that will jeopardize our health.

One final note from the survivors – “Be Patient – Let me do things at my own pace.”

 

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