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INDEPENDENCE IN SURVIVORSHIP
There is never an appropriate time to be diagnosed with a brain tumor or cancer however, young adults living with a life-threatening disease have their own set of issues that are specific to this crucial time in their lives when they are supposed to be gaining independence and beginning to live life – not questioning it.
The New York Times has recently started to featuring a blog by 23 year old Suleika Jaouad who was diagnosed with leukemia in 2011. Jaouad started to chronicle her experience as a young adult facing her own mortality as she receives treatments and as she faces medical issues that never even crossed her mind before being diagnosed. In her first blog, she writes:
“I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.”
This is the reality for young adults diagnosed with a brain tumor as well as those who were diagnosed in their childhood and must deal with the long term effects of the disease and treatments.
A total loss of independence at a time when independence is supposed to be rising is devastating for any survivor.
Unlike Suleika, I was a child when I was diagnosed with my illness – however the long term effects are something I deal with regularly as a young adult. I too, faced a loss of independence during a time when I thought I was ready to fly. Fresh out of college and working my first full-time job, I moved into my own apartment. This was especially significant for me because I had faced so much loss of control over my own life as a child and spent most of my time feeling dependent on others. However, because of my chronic health issues and weak immune system, I found that the environment I was working in exacerbated my health issues much more than I had ever anticipated. After a year that included several hospital stays, surgeries, and severe medication changes- I decided that I would have to give up what I had worked hard to earn in order to manage my chronic illnesses. I was grateful to be able to move back home with my parents who are unconditionally supportive of me, but the loss I felt as someone who should be reaching their adulthood was one of the most difficult emotional hurdles I have had to deal with.
While friends and peers are planning their futures – whether that means their careers, education, marriage, and having children – many survivors are facing reality that they might not even be able to have families. While their peers are hanging out at concerts or bars, a survivor might be too tired to stay out or have to worry about how they or their family will pay medical bills.
Being a young adult patient or survivor can be a very isolating time – while a survivor feels socially immature because they might be considered behind by society’s standards, they are also facing a view of life that offers a maturity and depth that many people do not face until much later into their adulthood.
Suleika’s blog is a very compelling recollection of experiences that she already has dealt with as well as experiences that she continues to go through.
If you’re interested in reading more about Suleika Jaouad, go to: