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WHAT DOES A BRAIN TUMOR SURVIVOR LOOK LIKE?
Last week I had a conversation with a parent about the difficulty in getting young adult brain tumor survivors involved in groups. I have been working with young adults for a couple of decades and know the challenges such as groups can feel too clinical, the location and time have to match their schedule, and the lack of appeal of “group therapy” can all be barriers. I also know the importance of bringing survivors together. Within the brain tumor community survivors and parents frequently discuss the lack of peer support and the social isolation many survivors feel.
The mother however brought up something else. She said “Kids are concerned that the other people at the group won’t look like them.” I knew what that meant, but I asked her to expand on it. She said “Many kids are scared the others will be more disabled than they are.”
Pediatric brain tumor survivors, unlike survivors of other childhood cancer, can have physical, cognitive, and behavioral changes. These changes can be mild or severe. It is a struggle getting the public to understand that being a brain tumor survivor does not mean that you are no longer intelligent, that you can not complete college, that you will not be employed and that in more ways than not you will not differ from your peers. People in the general public frequently jump to conclusions about survivors based on the person’s appearance such as a change in the way a person walks or if she now has facial paralysis, on their lack of knowledge about brain tumors or on a cognitive change such as slowed processing which means a person may talk a minute longer in answering a question.
My concern is if brain tumor survivors are scared that other survivors do not look like them, than how are we going to educate the public. I have found that in a group or at a conference such as the Heads Up Conference we conduct each year with Camp Mak-a-Dream, the range of ways in which people were impacted by a brain tumor and its treatment do not prevent the group from bonding, providing support for each other and gaining information and ways to advocate for themselves and for others who can not. I also find the groups consist of intelligent, passionate and genuine young adults who would be an asset to any group or employer.
What are you thoughts on brain tumor survivors being hesitant to participate in a group because of their fear of others being more disabled? We need to be open in our conversations because without a strong community, we can not be a voice for change.