Tuesday, December 13, 2011

The Price of Silence

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood...the transformation of silence into language and action is an act of self-revelation... [M]y daughter...said '....you're never really a whole person if you remain silent.'"
-- Audre Lorde

I am finally reading Audre Lorde's The Cancer Journals. I've had it on my bookshelf for awhile, but I wasn't emotionally ready to read it -- until now. This excellent, insightful collection of writings stirred feelings in me I had long forgotten -- feelings about being silent when facing breast cancer.

As is the case for many people, diagnosis for me was a lonely time. Some close family members, who grew up in the if-you-have-a-disease-don't-talk-about-it era, had difficulty with my diagnosis. In their own way, they loved me and wanted the best for me. They meant well. But in meaning well, they made diagnosis and living with breast cancer and its horrific treatments even more sad for me.

Because they told me to be silent about my disease and treatments. 

Upon my diagnosis, my one close relative  told me, "Don't tell anyone about it" ("It" being breast cancer.) When I asked her why, she said, "Nobody needs to know."

So I did the only thing I could do.

 I told everyone. 

And I mean everyone, from the gentlemen delivering my couch (they said a prayer for me)  to gas station workers to my relatives to my friends to my co-workers  to complete strangers to the walls. I wasn't fishing for sympathy. Instead I was fighting to stay alive -- and fighting against silence.

I was fishing to lend voice to my experience. I was fishing for power in a crappy medical situation where I didn't have power.

You see, silence doesn't sit well with me.

To be silent about breast cancer is to feel shame for a disease that is no fault of our own. To be silent is to disempower ourselves.

I blog for too many reasons to list here, but one of the reasons is to share my story, my truths -- and ward off the demon of silence. Being quiet about breast cancer, or any disease/condition for that matter, is harmful to the psyche. But there is something about breast cancer in particular that  encourages societal silence, which includes denial and blame, and this is designed to negate our feelings. 

Here are just some ways people and society attempted to silence me -- and, when it comes down to it, how society attempts to silence others throughout  breast cancer diagnosis and treatments, all harmful to our collective psyche. These are not listed in a particular order of importance:

1. My parents wanted to hear that I was feeling good during my treatments. So I gave them what they needed to hear and told them during each phone conversation how great life was and how great I was feeling. 

2. I can't count the number of people who told me that I got the "good" cancer and was lucky.

3. So many people told me to "think positively." I once again felt marginalized and silenced.

4. Even when I complained about feeling horribly ill, people told me I looked good, thus denying  my illness and harsh treatments. In fact, one person asked me how I felt, and I told her that I felt terrible. She then said, "Well, you look good, and that's what counts." WTF?

5. I was scolded by various people for being too negative about my disease.

6. Whenever people find out I'm a cancer "survivor," they say things like, "Good for you!" -- as if I had anything to do with living past this hell thus far.

7. Pinkwashing. Enough said.

8. People didn't want to hear about my fears or horrible experiences.

9. Others called me brave, courageous, strong, and heroic. Yeah, right.

10. I was told how lucky I was to get a boob job and tummy tuck when I was really going through a DIEP procedure. Here's news for all those knuckleheads who envied me: I'd gladly trade places with you.

My fellow  bloggers, all extraordinary, are lending voice to breast cancer. If these individuals whom I respect and admire hadn't had the courage to blog and tell their truths, the beast known as silence might win.

And we in the blogging community can never let that happen. The price of silence is too expensive.

Did you or someone you know ever feel silenced about a disease/condition? If so, how did you and/or that person handle it?

Please feel free to share your story. The more stories, the more power we have over silence.

I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System.  I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.


  1. This is powerful, Beth. It's so interesting to see how uncomfortable people are with anything 'negative'.

    Did you read Barbara Ehrenreich's 'Brightsided'? It's about this very issue.

    I'm curious, when you were speaking your truth, were you aware of the power it gave you to do so? Or did that understanding come later? I wonder because sometimes we're acting/speaking intuitively and only later realize why. I wonder where your impulse to speak out came from.

  2. Forgot to thank you for speaking - and writing - up. It makes a difference for you and for all who read your work.

  3. Beth, as it happens, I'm working on a post about this very subject -- and the payoff, both personal and universal, for speaking out. A great post and an important subject. xo

  4. Cynthia,

    Thank you for your kind words and, yes, so many people -- too many people -- are uncomfortable with anything negative. I actually purchased Brightsided, but I haven't read it yet. I'm looking forward to doing so.

    Your question about whether I was aware of the power of my truth telling as I was telling my story or later on is a really good one. At first, I perhaps was subconsciously aware of the power of speaking my truth. It didn't seem to feel that powerful to me at first.

    But then, as I was writing more and more blog postings, the power of telling my truths was instantly clear to me, and has achieved even greater clarity as I've been writing my book.

    I don't know where my impulse to speak out comes from. I'm honest and hate injustice and have endured pretty unjust actions in the past. I've also seen people I care about treated poorly. I think my having breast cancer was kind of the final straw, and I feel compelled to share my story with anyone who will listen.

    Thanks for listening....

  5. Kathi,

    Great minds think alike, huh?! I am looking forward to reading your posting about this same topic. I think the fact that we are both writing about this subject around the same time is significant. Sharing our truths is essential, and as you put it, there is payoff for speaking up.

    Thank you, as always, for reading.

  6. I hear you loud and clear. I'm posting up my You Tube video because I am so tired of "good cancer" "boob job" "you are so strong" "you had such mild chemo" (never mind that they now seem to KNOW one of those mild drugs does real brain damage, yay me).... and on and on it goes...

    Tell your story. Collectively, we can be heard. As a gang of big mouths, we will not be silenced.....


  7. Hi AnneMarie,

    And I hear you, too! Good for you for posting up your story up on You Tube. Let us know when it's up there; I definitely want to see/hear it.

    Good for you for telling it like it is. BTW, I know that my "mild" chemo, which happened to make me severely sick, has caused brain damage.

  8. This post hits the nail on the head. I loathed the, "Well, you look good." I was sick of hearing how wonderful I looked all through treatments. Meanwhile, I was sicker than a dog with my chemo treatments -they didn't see me just 5 minutes earlier looking down the bowl. I don't realize the anger I still feel over all of that, until I read something like this. When I read your posts, Beth, it's like reading some of my own postings when I blogged. Heaven forbid "they" all are uncomfortable with our being sick.

    I have to remind myself, they just don't know any better. How could they? Unless you have been there, you can't know.

  9. Beth, I love this post. And guess what? I just started reading Audre Lorde's book last night!! Again, great minds... what can I say? ha.

    I am so glad you have not been silent. I think it's a bit "easier" for women now days with the internet to "speak" out. It makes me really sad to think of women who came before us who wanted to speak out, but couldn't for so many reasons. I sort of feel like we are speaking for them too in a way. I feel like I can't be silent.

    Thanks for this important post. Keep on "not being silent."

  10. Chrysalis,

    Yes, it seems we all get the "Well, you look good" comments, like that is supposed to take away the physical and emotional anguish. I hear you loud and clear.

    Yes, I agree "they" don't know any better, and it seems we are on the same wavelength, as your postings are about the same types of topics.

    It is still infuriating, though, when we hear the "You look good" comment. Like you, I was sick as a dog, almost passing out a few times and throwing up. But I "looked good." It angers me to no end.

  11. I still don't know exactly why, but when I was first diagnosed I had to tell each of my friends myself. Each one.. and as quickly as I could before they heard it from someone else. It may have been partly making it real to myself.
    Second time through, I told all those who were still close to me. And that was a slightly smaller group. Although to be fair I was lucky enough to have a large group of the kind of friends you want to keep.
    Third time... I felt they probably had compassion fatigue. I told a few of the closest friends and let the grapevine take care of the rest.
    I also felt I had to be the brave face of breast cancer and carry on through it all. The fatigue that had me fall asleep standing up, the depression that fell over me like a blanket and the fear (quite real as it happens) of a recurrence.
    Now I believe in educating people about the reality. The not so happy face of what you go through. I tell the truth about living with the uncertainty, the loss of identity, and the immune system that gives way without warning.
    I guess I grew up along the way.

  12. I think Audre Lorde's book is one of the most powerful things I have ever read. The woman was so way ahead of her time don't you think? Imagine if she could have blogged???? I always kid around with my hubby about the phrase "the truth will set you free". But it really does and silence plays no part in that.

  13. Great post, Beth! Reading it, I thought more about my mother's time. She never said Breast Cancer. Never. She would only say thay found a lump. One of the reasons I'm so enthusiastic about support groups, whether cyber or in person, is so no one else needs to carry this disease alone. It's just too hard. I know you know that.

    I have had the ocassional perky boob comment thrown my way now and again. People just don't get it. So, yes! Speak, write, get your story out however you can. It's great we're not alone in doing that. xoxo

  14. It's always valuable to speak your truth, be it positive or negative. I'm glad there are many voices out there who share in the blogging community.

    As for the "You look great" compliment, I like what Evan Mattingly, who was featured in my book and unfortunately passed away last year said, "Cancer must make be better looking because everyone says how good I look!"

    I just smile and say thank you, and tell them they look good, too. That takes the focus off of me.

  15. I just posted a comment about speaking our truth on uneasypink.com's blog, then hopped over here to read your post on silence! Yes, great minds!

    Man can I relate to this. I live under a constant cloud of silence that pushes up against me on a daily basis. I am fighting my way out of it. (Thank God for blogging!) It is so, so important that we each find our voice and speak our truth.

    I was talking to a dear friend a few months back about the fact that the so many people in my orbit never ask how I am doing. It's like my cancer was a non event. Her reply? "That's because you look so good!" WTF exactly!

    Obviously, someone who has gone through cancer themselves would never say that. That is why the blogging community is so vital and important.

    Thanks for writing about this topic and bringing it out of the shadows.

  16. Thank you for posting the reality of this sucky disease! I have had to deal with so many of these issues. It bothers me so much when I'm told that I am going to be fine because a friend had breast cancer and they are 15 years cancer free. I am not "brave," I am scared to death! What is there to be "positive" about when you're fighting for your life, and you are the lucky recipient of every side effect, including neuropathy, loss of finger nails, being hospitalized with 105 fever, almost dying from a double mastectomy after the mammary artery decided to bleed out 3 liters of blood, and my favorite is "you look great." Hello? I have no hair, no eye lashes, no color, and can barely walk. Really? I look in the mirror, and I can see what I look like. I guess I didn't loose enough weight to look like a cancer patient...

  17. Nancy,

    Great minds, indeed! You and I always seem to have this sort of mind meld going on. Isn't Lorde's work powerful?

    Yes, I can't imagine how difficult it would be a woman years ago in the age when women and their "issues" were not spoken about, especially breast cancer. How lucky are we to have the Internet and the means to blog?

    By the way, thank you for the Twitter mention for this posting. I so appreciate it!

  18. Anonymous,

    You bring up a good point here and that is the various types of ways one should disclose a diagnosis of breast cancer to people he/she knows. I'm so sorry you have had to endure this three times. You have certainly been through hell.

    And you are so right about the depression and uncertainty. For me and I'm sure a lot of individuals, it's also about the randomness of life.

    Thank you so much for reading my posting and commenting. I value your insights.

  19. Rachel,

    Yes, I totally agree that Lorde's book is really powerful. I'm stunned by its absolute power and compelling nature. I agree she was way ahead of her time.

    Yes, if she could blog, reading her postings would be like holding dynamite. Ka-Pow! Thanks for reading and commenting on my posting.

  20. Stacey,

    Thank you so much for your support -- and your understanding. I agree that these cyber support systems -- blogs, twitter, etc -- are really wonderful.

    Yes, my parents can't even say "cancer," not even now. My mom refers to it as, "what you had," and my dad calls cancer "it." My brother gets it and has been my champion in acknowledging the disease.

  21. Tami,

    That Mattingly comment made me laugh. Like you, I do think it is so important to speak our truths, whatever truths they may be. One thing I'm learning in this blogosphere is that everyone's story is unique; there's no one cancer story, and each blogger adds value to the conversation.

    Thanks for reading and commenting on my posting.

  22. Renn,

    ARGHHH that "you look so good" comment drives me crazy. Thank you for reading and commenting on my posting about this idea of silence.

    Yes, great minds do think alike! Lately, I've been on the same virtual page with a number of bloggers in terms of topic or how we are thinking about a particular thing.

    I'm so glad you blog, Renn. Each time you do so, you lend that all-important voice to breast cancer. That cloud of silence is a powerful one. Hang in there....

  23. Rosina,

    Thank you for reading and posting your comment. I'm so sorry you have been through such horrific events -- all because of the sh*tty disease called breast cancer. Your comment brought tears to my eyes.

    I really appreciate your candor, speaking your mind and telling me and the cyberworld about your story. No one should have to endure what you have.

    And yes, I hated being told about all the people who had cancer and now are 10, 15, or more years from the disease. As if cancer can't come back.

  24. Beth I sat reading your blog and I had tears falling. It felt as though I was living in your space. I had no family support, told suck it up and take it..Being told Ok you had surgery you had Chemo Big Deal it's over move on it's not that bad..Can't tell my family that my diagnosis may not be a good one after all it was stage 3 grade 3 all I wanted was for them to listen to me. Help me through it bake me a cake bring me some food take a load off my son he's 16 taking care of his puking sick mother. I could go on but you know. I am writing something in my blog and I'd appreciate if you could read and let me know your thoughts.....
    Thanks Beth.......Love Alli xx

  25. Alli, we have so much in common. I had some family support, but it was minimal and I was told at one point that "It (meaning cancer) is over. I went through a lot on my own.

    I totally get it. I would definitely love to read your blog, so I will read and comment as I usually do.

    Thank you for your moving comment and for reading my posting.

  26. Beth, I love your expression, "the demon of silence." If we let that demon oppress us, we can spiral down into a depression with enormous consequences for us and for our community. We do need to speak out.

    I can identify with so many of the things you have listed. I believe people keep saying these platitudes over and over because they don't know what else to say. If we don't educate them, they will continue in their ignorance (and possibly their insensitivity). Thank you for voicing what many of us feel at a gut level.

    And now I have added The Cancer Journals to my ever-growing list of must-read books.

  27. Jan,

    Thank you for your insightful comment, and I agree: people just don't know what to else to say, so in meaning well, they say weird, awkward things -- not often helpful to the cancer patient.

    I'm glad you will be reading The Cancer Journals. It's a short book packed with power. I finished it and loved every word.

  28. Hi Beth, only just found this post through Marie's round up.
    The Cancer Journals is a very powerful book, you could turn to practically any page and find something to quote. I have a DVD of Audre Lorde speaking and she is amazing. If only she were here today to add to our breast cancer conversations.... what would she have to say about the culture it has become?

  29. Hi Sarah,

    Thank you for reading and commenting on my posting. Yes, I agree that everything from Lorde's book is quotable. It was really hard for me to figure out which quote I wanted to open my posting with. It's great that you have the DVD of her speaking. Yes, I often think of how she would react to the current breast cancer culture.

    Have a wonderful New Year!