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LONELINESS: THE SIDE EFFECT THEY DON'T TELL YOU ABOUT
When diagnosed with a brain tumor, parents and children are inundated with information about long term effects, medications, ways to cope with side effects and more. One long term effect that is often overlooked can be referred to loneliness. It’s not listed on the medication leaflet given by your pharmacist or in medical research studies.
I just finished reading a blog called, “Nobody Shaved Their Head for Me,” by a young adult cancer Erika Lade.
The title immediately resonated with me as I know what she’s referring to and how peer relationships change after being diagnosed with a life changing illness. Brain tumor survivors especially, deal with so many intricate and chronic late effects that maintaining friendships often seems impossible.
Lade talks about different “stages” of friends, comparing them to stages of cancer. A stage I friend is one who is there for you through and through. A stage II friend is concerned and checks in intermittently, and so on.
The main things I have noticed growing up as a survivor are that:
Peers think that once treatment is over, you’re good to go. They don’t understand that the treatments themselves cause long term issues. They don’t understand why you just don’t “get over it”, both physically and mentally. I spoke with one of my survivor friends who ended a long friendship from because his friend couldn’t understand why he wouldn’t play with them on their baseball team. He told him just that; that he needed to get over it and move on. Forget about killer headaches, a greater chance of concussion if he hit his head, or physically not being able to keep up. His friend thought that he was cured and could move on the same way as pre-brain tumor.
Plain and simple, they just don’t get it. This is true especially for survivors like me, who exhibit no outward signs of having a disability. In high school, I “affectionately” earned the nickname “old lady” by some of my friends because I would never want go out, pick up or drive them late at night. I’ve been told that “everyone gets tired” and you just have to deal with it, or that young people can handle it. Few people realize that if I lack sleep or overtax my body, I will have vertigo until I catch up on sleep, my emotions will change drastically in a short amount of time and I can even become physically ill if I am worn down enough. I’ve learned what my limits are and how to listen to when my body says “stop”, but become frustrated when peers challenge this.
Lastly, and I think this one is especially true for brain tumor survivors, peers don’t understand what some of the long term effects, even the noticeable ones, mean. A survivor with a slow processing speed is not dumb. They may speak more slowly or have a harder time finding the right words to finish their sentences, but they can fully comprehend what the person they’re talking to is saying. I think that many peers, especially in their teens and 20’s can be impatient or don’t think their survivor peer is on the same level as them even if they are.
All of that being said, I think it’s also important to share the other side of the story. These things may very well be a result peers just not knowing or not being educated. As I reached my high school and college years, I lost many friendships because I isolated myself from them. As they say, hindsight is 20/20 and in hindsight I can see that I felt other people were judging me based on the roadblocks I mentioned but in actuality, I took myself out of these friendships before I could get hurt. Sure, many people may have not wanted to wait for me but if I had talked more openly about my diagnosis and what it meant, I’m willing to bet a few more friends would have stuck around. Someone can only invite you over their house or call you so many times before they think you’re not interested.
There isn’t a clear cut solution to this problem. We can’t control how other people react to us or how they perceive us. It’s difficult to tell a teen to just be honest or to not care what other people think, when it’s only natural to want to fit in.
These barriers are daunting and present the need for a lot more education and awareness to be spread about cancer and brain tumor survivors, the implications of their diagnosis and treatment, and how affected survivors are by this issue.
For Erika’s original article, please go to: