Everything Changes - The Guide to Young Adult Cancer

Kim, a thyroid cancer patient, responded to my last week’s post about tips for handling family during illness:

“I think I might be the only person in the world who hasn’t told her own parents about her cancer diagnosis.  :P  From growing up, I know that my parents, esp my mom, would totally freak out if she ever found out about my thyroid cancer.  She would try to control every last food item that I put in my mouth and would probably try to come live with me (uninvited).  With my work and life, I couldn’t deal with any of that drama during and around my surgery, which was over 3 months ago.  Now, though, I wonder how long I can keep this secret from them.  Any thoughts or advice on breaking this type of news ‘after-the-fact’ would be appreciated!  Or, validation that it’s OK never to tell your own parents?!”

I know from writing my book, Everything Changes, that Kim  is not alone.  I’ve met and written about other people who chose to not tell their parents about cancer and other serious medical conditions, or who denied their parents’ help and presence during treatment.  There are rare circumstances where it may be a smart choice to wait to tell your parents.  If your parent is irrational, you have an extremely stressful relationship, or they have a mental illness that prevents them from being helpful, empathetic, or supportive, going through cancer care without your parents and with an organized set of stable, supportive friends might be the best choice for you.

Kim, I don’t know that there is a right way to tell your parents, but here are a few things that come to mind that could be helpful:  Do it in person if possible;  Don’t do it in public; Ask a stable family member (a cousin or aunt) to be present with you (or if you have to do it over the phone ask them to call your parents after you’ve spoken with them); Bring or send simple, written information to back up good, rehearsed definitions about your disease, your treatment path, and how it impacts your daily life;  Think about how to answer when they ask “Why didn’t you tell me?”  If it’s a good time to dive into the root of your relationship problems, then prepare for how to have that conversation.  Otherwise, prepare strong statements about how and why not telling was the most supportive thing for you.  And acknowledge that you understand why they might feel hurt by your choices; Alert your friends about the conversation so they are there afterwords to give you the love and support you deserve.

I’m curious what words of advice or support other people have for Kim.  Have any of you hidden your cancer from your parents or waited a long time to tell them?

Read more about how other young adult cancer patients handled relationships with their parents in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I write, talk, and debate a lot about when as young adult cancer survivors we should reveal our illness to a date.  But what happens when we don’t even get to tell someone about our cancer because the grapevine beat us to it?

When I lived in San Francisco, some friends joked that I was The Dancer with Cancer.  It was news on the street among my extended social circle, and often I didn’t mind because many people who heard offered me help that I really needed: rides to doctors appointments, help with laundry.

There is a power to being about to decide to whom and when we reveal our illness, especially when it comes to dating.  Take  Sheila in Everything Changes who was extremely private - not even  disclosing cancer to her close friends.   On the other hand, Dana, also in my book, was relieved that when she and her husband began dating, he already knew that she had cancer.

In today’s New York Times Well Blog, Tara Parker-Pope interviews Trisha Meili, the Central Park jogger, who 20 years ago today was raped and brutally attached at age 28, resulting in brain injury.

“I met my husband on a blind date in 1995. A woman I had gone to college with knew him. I told her, ‘do me a favor, don’t tell him my history. That’s my story and I want to be able to tell it if I want to.’ In talking to him before we met, I had told him I went to Yale business school and the school of management. He mentioned it to a friend who had also attended Yale. She said, ‘You know who that is, don’t you?’ And she told him. In the end, it didn’t matter, but there was a little bit of that feeling, ‘Hey, that’s my story.’ The media keeping my anonymity is something that I do appreciate. I was known as the Central Park jogger, and when I told my story it was my choice. That was a degree of control that I had completely lost with the attack and the rape. When I’d meet someone it’s not like I would say, ‘Hi, I’m the Central Park jogger.’ It’s kind of a conversation stopper.”

Have you ever had someone find out about your cancer or another illness without you telling them?  Were you glad that they already knew, or would you have rather told them yourself?  In your circle of friends, among co-workers, in your family, did your cancer news spread like wildfire? Did you have a control valve that let you determine who knew?  If you could go back, would you do anything differently about disclosing your cancer?