• 100 Days of Good Karma: Day 71 (The Stigma of Cancer)

    Stigma

    Saturday, September 20, 2014

    Day 71 of 100 Days of Good Karma.

    I go back and forth on wanting to wear a wig and just wearing a scarf.  Wigs can be itchy and hot, but I get fewer stares when I wear it.

    And the truth is that not having hair bothers me.  More than I’d like to admit.

    Being bald marks me as a cancer patient, and thus earns me all the social stigmas associated with the disease.

    When I was first diagnosed, I thought what I feared was the pity of others.  I started the 100DaysOfGoodKarma project in an effort to offset that pity.  A sort of class clown “laugh at yourself before others can laugh at you” defense mechanism.

    This project has turned into so much more.  It’s kept me sane, and hauled me through some really shitty days.  And I firmly believe it has changed, for the positive, how my readers treat me.

    Unfortunately, it does nothing for offsetting the reactions of strangers.

    We had pizza delivered the other night and I didn’t think anything of answering the door with a scarf on my head.  I was at home, after all, and this is Texas where it might be September but it’s still hot as hell outside.

    After I paid, the delivery guy gave me a long look and said, “Ma’am, I hope you have a good night.”

    I recognized the tone and the look.  It was just a little too sincere coming from a stranger, his voice just a little too low and reverent.  I frightened him because cancer frightened him.

    All I could do was sigh and thank him before closing the door.

    The same thing happened when two guys came to the door offering a window washing service.  They modified their goodbye with, “Ma’am, I hope you have a blessed day,” but the tone and the look were the same.

    With one or two exceptions, other parents avoid me if I wear a scarf when I pick the kids up from school.  They glance up to my scarf and then look away like they got caught doing something dirty.  Conversations are brief to nonexistent.

    I don’t think any of them consciously think, “I’m not going to talk to her.  She has cancer.”  Their reaction is totally involuntary and spurred by fear.

    I don’t blame them.  I’m a walking example of one of their biggest fears.  I very likely did the same thing before I was the one with cancer.

    Sadly, the avoidance is not just from the parents at the school.  People I considered friends started avoiding me when they learned of my diagnosis.

    I consider myself fortunate that I have far more people in my life who care enough to not avoid me.

    When I wear a scarf, strangers approach me because they also went through cancer.

    One woman followed me around in the grocery store before she found the courage to ask if I had cancer.  I got her diagnosis story, her cancer stage and her medical history before she even mentioned her name.  She was a sweet woman, just looking to be supportive.  But I doubt she’d have asked me about cancer if I’d been wearing hair.

    And there was the guy in a coffee shop who tried to peek under my scarf.

    He reached his hand out toward my head, saying, “What do we have going on under here?  Is there anything left?”

    Luckily I ducked his hand before he could remove my scarf.

    He went on to tell me that he’d had brain cancer three times.  He even removed his hat to show me the scars on his head.  I forgave him for the social impropriety of trying to remove my head covering because I think some damage was done during one of the brain surgeries.

    But I still declined his suggestion that we should be Facebook friends.

    I turned to the internet looking for an answer to deal with these types of interactions.

    Google ‘cancer stigma’.  Go ahead.  You’ll be amazed at what comes up.

    I found an incredible number of articles associated with the stigmas surrounding cancer.

    Around the world, cancer patients experience that people may:

    • see you as less than you were
    • avoid you
    • feel ill at ease with you
    • behave in a hurtful or discriminating way

    I’ve encountered the hurtful.  There was the stranger who laughed, though I’ll never know if it was because she thought I had cancer or if she just thought I had a strange haircut.

    An article on CancerWorld.org summarized a study conducted by the LiveStrong foundation (you can read the article here.)  The LiveStrong foundation found these common views on cancer from around the world:

    • I would feel uncomfortable being friends with someone who has cancer.
    • People can only blame themselves for getting cancer.
    • I would feel isolated and alone if I received treatment for cancer.
    • If my spouse had cancer, I would consider leaving him/her.

    This last one shocked me.

    Justin and I have talked about a lot of hard things since I was diagnosed, but divorce has never once been one of them.  My heart goes out to those who have been diagnosed with cancer and had a spouse leave them because of it.  Having cancer is hard enough without adding a sense of abandonment.

    I was surprised to see my experiences articulated in articles written by total strangers.  It is both sad and reassuring than these stigmas are experienced world wide.  Sad because I hate that anyone has to go through this, but reassuring to know I’m not alone.

    Today’s silver lining:  I can share this information with you. And maybe help end the stigma of cancer.

    What’s your silver lining today?  I love comments!

    xoxo,
    Meghan

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15 Responsesso far.

  1. Pam says:

    Wow, Meghan! As usual, I love your story, which is poignant and genuine and contains that edge of humor I so value in your writing. But wow — CRAZY studies. People can only blame themselves for getting cancer?!? Leaving your partner with cancer?!?

    Are people INSANE? No wait — don’t answer that.

    Thank you so much for making me (and so many others) aware of so many of the less discussed parts of cancer…

    Big hugs from CT,
    Pam

    • Meghan says:

      Hi, Pam. Yes, those thoughts on cancer surprised me, too. There is a huge stigma surrounding lung cancer, especially if the person was ever a smoker. As for leaving your spouse/partner because they have cancer, I think in addition to the emotional misery it brings, that response might have something to do with the fertility issues that usually accompany cancer. I am aware how lucky I am to have my family and friends. Not everyone has that sort of support system in place.

  2. Tina Smith says:

    I think it is fear. Mostly that they’ll say or do something wrong? I’m unsure. I wonder if people realize how their inappropriate reactions affect others. It’s always good to be reminded, so I don’t do the same.

    • Meghan says:

      I think it’s fear, too, and I understand it. I can’t fault anyone for their fear. Cancer is a difficult thing to wrap your head around. I have certainly been on the other side of this wondering what the hell you say to someone with no hair. I always wanted to apologize to them that life dealt them such a tough hand, but ultimately decided not to say anything because I figured they didn’t want to talk about having cancer. Now I know that I’d be okay with talking to others about having cancer, but it doesn’t make for the best small talk. It’s a nice little Catch 22.

  3. Linda says:

    Maybe baseball caps instead of scarves? There is another regular at one of my hangouts who is somewhat artsy/craftsy. She will get a cheap Walmart baseball cap and paint it or put glitter and sequins on it, or glue flowers (or other items( to it, etc. Some of them are beautiful works of art, others are just cute and/or funny. However, if avoiding attention is your goal, this may not be the answer. We all look forward eagerly to her new creations!!

  4. Sara says:

    I don’t know why I am continually surprised at the rudeness and ignorance of other people. Thankfully, there are also lots of positive and supportive people in the world too!

    • Meghan says:

      There are a lot of positive and supportive people in the world. A lot more than I realized. I don’t think people are intentionally rude. The guy in the coffee shop for example… I really think he had some sort of handicap that made his social skills somewhat awkward. His intentions were good. And the other parents at the school… I can’t claim I would have handled the situation any differently than they do before I had cancer. And it could be that I’m just sensitive to any sort of social awkwardness right now. I try and give people the benefit of the doubt when I can. In general people have been positive and supportive. Even the delivery guy and the window washers were trying to be positive and supportive. Cancer is just something that scares people and they don’t know what to say.

  5. i read your blog at night before bed, I always wish I could pick up the phone and chat because I have so much to say, more than I can articulate with 2 thumbs on my iPhone at midnight… Until the next blog post, and until I tie up your phone line for an hour, I’m thinking about ya!

  6. Cindy Smith says:

    Great writing! I love how you have such an ability to state the truth, no matter how it came to you. Maybe it is both fear and kindness. People’s own fear of cancer and maybe they truly believe that you would not want to talk about it. And you probably don’t all the time, but to always have to tell people “I’m fine” when they ask how you are, if they even ask, also get’s old. It’s so sad that so many people don’t have the courage to not avoid someone who is clearly going through a difficult time, to ask people how they are doing and truly mean it and then to take the time to listen to someone’s answer despite what it might be.

    Hopefully I’ve never done that to someone because I’ve always hated it when people have done that to me. Our battles are so different. Mine certainly isn’t life threatening. But that look of pity, I know it well from my days before my first hip replacement (can you picture me in a wheelchair?) and still see it when I am having a bad day and have trouble getting around.

    You are stronger than all of those people combined and will overcome these battles with grace and dignity and with the knowledge of how to treat people going through a rough time, no matter what is causing it.

    (Oh, and how about a completely crazy, totally off the wall ball cap? I have a lot of ribbons and stuff from Heather’s days on the drill team! Been looking for something to do with that stuff.)

    • Meghan says:

      The looks of pity are hard. What I want, what every cancer patient probably wants, is just to be treated normally. I think people are striving for ‘normal’ in daily interactions, but it doesn’t always come across right. Most people don’t intentionally try for rudeness or awkwardness. They see someone with a terrible problem and instantly relate it to themselves, which seems like a totally normal thing to do. They don’t realize how their looks make cancer patients feel. I certainly didn’t when I was the one doing the looking.

      As for the off the wall hats, I think I’m okay with my boring, non-descript hats for now. Maybe I’ll be ready for that in the future. 🙂

      • Cindy says:

        Totally understand about wanting to just feel normal. I think that’s all most people going through any sort of hardship wants.

  7. Shawn says:

    Love ya hun yes being bald is tough as hell but overcoming the ugliness of others is about as hard.
    I have grown balls and started lifting up my scarfs to freak them out then they dont stare anymore.
    I have Started to embrace okay dint have to work another 20 minuted to do the hair anf yes I am bald but I am a fighter and if I have to look this way to kick this ib the ass then embrace it. There are some pretty cool headbands and jewlry that fit over the scarfs and fall is here maybe we can rock some cute hats.
    Stay Strong lots of hugs sent your way

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