Secrets and Lies

Posted on: September 27th, 2013 by
7

When I was first diagnosed with breast cancer, I became a stigma.

After finding out about my diagnosis, my mom’s first words to me were “Don’t tell anyone.” I cried, telling her I needed to talk to people about this. Her response was, “Nobody needs to know about it. Don’t tell our family or your friends. They will tell everyone about that “thing” you have.” My father concurred.

I didn’t tell them that I already told a couple of my friends about “it” and “that thing” (aka cancer). So I lied to my mom and dad and promised them I wouldn’t tell a soul. And for a while I kept my promise: my illness was a secret I swaddled in major deception. When extended family members called just to chat and asked how I was doing, my answer was always “just fine.” If I had a doctor’s appointment and I wasn’t available to answer my phone, I lied and made some excuse for why I was “busy.” One night, I was sobbing at home and refusing to answer calls. My call-back excuse to callers a couple of days later was that I was at a party.

A pity party, that is.

Each time I lied with a cheery voice, I felt silenced and shamed and anguished. My secret became an unbearable, weighty burden.

The dam finally broke.

To my parents’ dismay, I “outed” myself to my extended family, as well as friends and acquaintances. And during treatment, I spoke openly about my experiences to support groups and various professionals. And I received lots of love and compassion.

But my motor mouth really took off with my bilateral mastectomy years later. By that time, I was a pro at airing out my dirty laundry.

I told the guys who delivered my new couch about my upcoming bilateral mastectomy (more on that in a future post), I told strangers about the surgery, published my story in a popular anthology, made media appearances, and found blogging as a means to public discourse about breast cancer.

Recently, an acquaintance’s mother was diagnosed with cancer. The mother’s request of her daughter: not to tell anyone about the diagnosis – not family, not friends. (The daughter’s spouse spilled the beans to me.) The daughter’s loyal decision is to respect her mother’s wishes and keep quiet about her mother’s illness.

My point is not to judge this mother and daughter’s decision to keep quiet. There is no correct way to handle and cope with a cancer diagnosis. Everyone has a different coping mechanism. Keeping a disease secret might work for some individuals; others, not so much.

But this keeping-a-disease-secret phenomenon got me thinking. And I realized it’s a pretty common reaction when a loved one is dealing with cancer. I also understand that family dynamics are pretty complex. Perhaps a family believes in pulling oneself up by one’s own bootstraps and are appalled at having tons of concerned people bothering them with offers of help. A family could be in denial about the illness. Other families build walls around themselves. Still, other families, as in my case, believe the “C” word is a stigma and loaded with a type of shame that I don’t quite understand.

shhhh

If you are in a family keeping cancer (or any illness for that matter) a secret, just know this:

You are not alone. Many, many families keep cancer a secret.

Cancer is insidious in family relationships. Strife can occur between family members.

You might want to seek help from a professional support team.

Today, my mom and I have a good relationship, something I couldn’t say when she swore me to silence after diagnosis. To this day, my mom still cannot say the word “cancer.” But I tell her when I go to the “cancer doctor,” and instead of turning away, she now listens and wants to discuss how I am.

For my parents and me, the veil of shame has finally been lifted, leaving mutual respect in its place.

For a related post, see The Price of Silence.

Have you ever felt compelled to keep quiet about a cancer diagnosis?

How did you and your family handle a cancer diagnoses?

Please feel free to share your stories.


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7 Responses to Secrets and Lies

  1. karen sutherland had this to say about that:

    dear beth,

    I cannot imagine the anguish you felt having to keep your cancer dx a secret. a close friend was just dx’d and demanded his wife tell no one – not even their young adult children. finally, the cat was let out of the bag yesterday when I ran into him as we were both proceeding to the radiation suites. his wife kept her word, and I told him I knew nothing, and no worries, I would not ask any questions. with tears in his eyes, he spilled out the whole story.

    this is the way he grew up. family came from a renowned floral business that serviced mansion row in our town during the Victorian era. they felt they had to maintain a veneer of perfection, and that troubles of any sort were to be a most tightly held secret – they executed a flawless product and it could not be viewed as anything that came from other than a flawless family business. this got passed down to my friend, and I believe he has realized it’s just too heavy a burden to carry alone. now he can receive the support and love and kindness he deserves – what a tremendous relief, and so good he is the one to be breaking the cycle of needless secrecy. I am so glad there has been a happy ending with your family. thank you for this post on a phenomenon that sometimes is bewildering and seems cruel, but often is as painful for the people who hold onto not telling, as the person who is prevented from getting needed support if only they could share their story.

    much love and light to you, dear friend XOXO

    Karen, TC

    • Beth L. Gainer had this to say about that:

      Karen,

      Thank you for sharing this. I’m sure this gentleman felt relieved when he confided in you. I can only imagine how hard it also was for his wife to keep the secret; she will also benefit from the support she needs as well.

      It truly is amazing how holding onto secrets gets passed down in families, from generation to generation. It might work for some families, I guess, but for me, secrecy has no benefits. It isolates one from the love and support one needs in dire times.

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  3. Nancy's Point had this to say about that:

    Hi Beth,
    I’m sorry your mom asked you to keep your diagnosis a secret. That must have been so horribly difficult. And of course, eventually the dam broke. How could it not? I’m glad you have a good relationship with her today.

    I guess you know how I feel about keeping quiet vs. sharing our stories! I’m grateful that you decided to share your story too. It’s very healing isn’t it?

    Family dynamics are complex. My dad never discusses cancer. It hurts to realize I am the reminder… Thanks for another terrific post.

  4. Beth L. Gainer had this to say about that:

    Thank you for your comment, Nancy. It was a very difficult time to deal with cancer and feel like I couldn’t tell anyone. My parents came from an era where cancer was not talked about.

    You and I agree about sharing our stories. I find it so healing, as you say.

    Cancer seems to increase or decrease the complexity of the family dynamic. I’m sorry you are the reminder for your dad. I think this happens a lot in families when two or more people are diagnosed with cancer.

    Thank you for reading and commenting, Nancy, and encouraging me to continue sharing my story.

  5. Kathi had this to say about that:

    Oh, Beth…

    I sometimes wonder how my parents would have reacted to my diagnosis. I know they would have been devasted & stunned, but it’s hard to know if they would have asked me not to tell anyone. I missed having them around then, but I often thought that I was just as glad they weren’t around for it. They both had so many serious health issues themselves, I would have worried about the toll this would have taken on them.

    I know that when I was first diagnosed, I just wanted to crawl under the covers & not come out. But I also knew that was exactly the wrong thing to do. It would have been far too stressful for me not to tell my friends & colleagues. Perhaps especially at work, I needed people to understand why I was ‘not myself.’

    And yet, I also have friends who chose only to tell a limited number of people. One of these is someone whom I met on an online forum, where of course she had some anonymity. And I do understand where she was coming from. She did not want to deal with people who might bring their own baggage about cancer, but only to choose telling people whose help she would need & value. I understand that, too.

    You’re so right. Each person has to choose for themselves, but I’m so glad that you chose the speak out. And start a blog. And write. Your voice has added so much, perhaps especially for those who do not feel that can be as public. xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Thank you, Kathi, for your thoughtful reply. I’m sorry about all your parents endured. Thank you so much for your kind words about my voice needing to be heard. That means a lot. I’m so fortunate that I crossed paths with you, for your voice has also been so very necessary in the world.

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