Breast cancer is not a Facebook status game

January 17th, 2013 § 88 comments

** please note I updated this post in October 2013. I added the following information:

Once again Facebook games about breast cancer are making the rounds now that it is October. I posted this last year and got some flack from people who thought anything that “raised awareness” about breast cancer was good and couldn’t understand why I am critical of these messages.

My point is that this isn’t awareness.

There probably isn’t anyone on Facebook who doesn’t know that breast cancer exists. But there certainly is a lot of myth-busting to be done. This is not how to do it. Topics that do need attention include male breast cancer, the underfunding of metastatic research (30% of people with breast cancer will eventually have metastases yet less than 5% of breast cancer funding overall goes to metastatic research), the fact that for many breast cancers 5 years in remission does not mean you’re free from risk of recurrence, not all breast cancer presents with a lump so self exams and/or mammograms may not always find  certain types of breast cancer (inflammatory breast cancer)… the list goes on and on.

There’s a lot of work to be done educating. Education is awareness, these Facebook posts are not.

A friend asked me, “What can I do to help? I can’t donate money to your research fund but would like some ideas on things I could do instead.” What a great question. Rather than post these messages on your Facebook page here are a few easy ideas:

1. Make sure you are properly vaccinated from vaccine-preventable illnesses. This includes your family (kids and your parents if applicable), friends, and anyone else you can get involved (nag). Boosters like those for pertussis are very important. Get your annual flu shot. People over the age of 65 and some others at high risk should also talk to doctors about the pneumonia vaccine.

2. If eligible, donate blood and platelets. These products are needed by cancer patients constantly.

3. If eligible, get tested to be a bone marrow donor. Go to BeTheMatch.com to see the requirements. The initial registry just requires a cheek swab. It’s easy as can be.

4. Read blogs/follow tweets by people living with cancer. I think understanding the day to day lives of those of us living with it is a great way to truly become more aware. It’s one of the reasons I spend so much time writing here. I try to bring you the science, the experience, the thoughts of a mother trying to cope with raising a family and managing an terminal diagnosis.

If you want to see the comments on the new post you can go here. The original post appears below:

………………………….

I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:

So here is the time of year again when we try to raise awareness for breast cancer through a game. It’s very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we make references to your love life status. Do not answer to this message just post the corresponding word on your wall AND send this message privately to all the girls in your contact list!!!!!! BLUEBERRY = single; PINEAPPLE = it’s complicated; RASPBERRY = I can’t / don’t want to commit; APPLE= engaged; CHERRY= in a relationship; BANANA=married; AVOCADO= I’m the better half; STRAWBERRY= can’t find Mr. Right; LEMON = want to be single RAISIN = want to get married to my partner. Last time the underwear game was mentioned on tv, let’s see if we get there with this one !!!!!Copy and paste this message into a new one and send to all your girly friends and update your status with your answer. DO NOT RESPOND TO THIS CONVO, just leave and participate.

I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.

First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Um, hello… men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.

Just because it says it’s about “breast cancer awareness” doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Education underlies awareness. To even call something a “game” and honestly believe it’s doing anything to help any aspect of this disease is delusional.

I also think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.

I say: count me out of these Facebook games.

I have stage 4 breast cancer and it is no game to me.

 

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§ 88 Responses to Breast cancer is not a Facebook status game"

  • s.a.meade says:

    I’ve just posted a link to this on my FB page. Thank you, as always for your honesty and insight.
    xxx

  • Shari Lentz says:

    Nicely said!

  • your unconventional approach is refreshing and enlightening. thank you. keep writing.

  • Just shared this on my fb page. I’ve always despised those posts, but you have so much more standing than I to say so. And why.

  • dglassme says:

    Perspective is half the game, getting it out there so it is understood is the leap.

  • Beth Gainer says:

    I’m sharing this post on Facebook. I ignore the stupid requests because I have no energy to address the idiots who think this is a fun game. You said it beautifully. Thank you.

  • Julie Moutes says:

    Amen to all that.

  • Cancer as game? No words.

    Another twisted version of “cancer as gift.” How can people come up with this crap?

  • Well done, Lisa. We just have to keep talking about this. I think I’ve finally stopped getting included in any of these. I wrote a long FB rant and blog post with the first one – the bra colors – in which I talked about the real colors of BC (the red turned to white of scars, the blue of our rads tattoos, etc. – nothing cute or sexy about that). I have written long explanations to groups when I’ve been “invited” to join the fun, and then watched as nearly everyone dropped out of the group. The one that was most hurtful, though, was the one where women wrote something implying they were pregnant. I went off completely on that one. Way too many of us have given up our chances to have our own babies in order to stay alive – it was just too insensitive. This year, during the month of Oct., I posted a first name every day of someone I know personally who’s had or died from BC. I explained what I was doing & why. And finally, I am no longer included in any of those memes. I’ve also noticed that almost none of my friends take part either. Progress can be made. Your piece, and the re-posting of it, definitely helps.

  • Kelly O says:

    So well said. I’ve never participated and never will. I’d rather spread information like symptoms – my mother has ovarian cancer and that’s where I focus. And hell ya, men can get breast cancer – a male friend of ours has recently had his breast cancer spread.

    Thank you for sharing.

  • Thank you, Lisa, for posting this. I agree with you 100% and will not be responding to any FB requests because I am still a “lady” and my response would probably prove that statement to be false. I think it best I just stay out of it becsuse I am very outspoken when I am angry, and no one would benefit from a pissing contest.

    I am grateful you warned me BEFORE going on FB tonight!!

    Thanks, Fran

  • jonahshome says:

    Thank you for ‘telling it as it is’ Lisa. Dealing with the idiots who write such rubbish couldn’t have been done better.

  • beckisthree@Yahoo.com says:

    Outstanding explanation. I have always felt that as a survivor of domestic violence, it was ridiculous for my friends to think I’m not supporting victims because I refused to ‘like’ some ignorant meme.

  • Liz Monahan says:

    I also just posted this on FB. I know people will say “oh it’s all just meant in good fun” but they don’t realize that they are using cancer as an excuse to post silly things. I’m not a breast cancer patient but as a stage 4 kidney ” cancervivor” I understand what you mean. Thanks for another great post.

  • BlondeAmbition says:

    BRAVO, Lisa! (And thanks for the head’s up that this inane meme is making the rounds again). Nothing infuriates me more, especially from friends that “think” they are being supportive. In the past, I’ve quietly educated and soon tired of their tedious explanations justifying their participation. In October, I took the bold step of crafting a response and “replied all”. I was immediately unfriended (and this was a former trainer of mine who I incidentally introduced to her husband). I sent her a personal note to open a dialogue and she never responded. I never looked back. I’m glad to be armed with this post and I’m saving it as soon as I see “fruits” showing up on my newsfeed … xoxo

  • Sus says:

    Thanks Lisa! I’d like to know who these awareness things are aimed at. Who isn’t “aware”

  • Farrell says:

    Amen. I’ve always thought those games were pointless anyway.

  • I’m embarrassed to say that I participated two years ago–in those days before BC when I didn’t have the understanding of ‘awareness’ that I do today. It’s all about educating one another, isn’t it? Thank you for writing this post, Lisa, so that I can in turn share with others why I will no longer be participating.

    • dglassme says:

      jbaldwinglenn: Couldn’t agree more, my friends may just be naive/unaware and following the movement without realizing it is hurtful, and not appropriate. EDUCATE! Saw the other day where a dear friend posted a follow me sort of thing that Lisa refers to, not sure why, her or someone in her family but, I don’t think she realized this is not something those with cancer need from a support perspective. We need a cure, not unrelated strawberry status to raise awareness for breast cancer through a game. How does love life status or underwear color relate to a cure for cancer, if we don’t sensationalize it no one will care. WRONG, we all need to do our part to help make sure people are aware of the right pieces because it is easy to be led by a premise that’s off the mark, it happens all the time.

  • I’ve probably been guilty of it too because I wanted to “fit in” and be social, but I have also gotten sick of it as well. The cruelty to animals ones and the beat up kids and women.. those all disgust me. Anyway, like a lot of others, I am sharing this on my Facebook page so thank you again.

  • Susan says:

    Thank you Lisa. These things especially when someone posts to me page really annoy me.

  • Nikkers76 says:

    I have stage four breast cancer too. And I totally get that cancer isn’t a game. I’m not sure the people passing this message around think cancer is a game either (does anyone think that?).

    I agree, this probably isn’t a great idea, and doesn’t add much value in terms of education, but it’s probably well intentioned. It’s really easy to take down someone’s bad idea. It’s really hard to have a good one.

    If someone wanted to use their facebook status to drive awareness or education, what do you think they should post?

    There’s many things that cause me outrage. People not having access to health care when it’s readily available. Insurance companies that don’t meet their obligations. Cancer itself. Well intentioned, but poorly executed emails and facebook games…. I’m gonna let that one roll….

    • I think I’ll let your words say it back to you… it “probably isn’t a great idea, and doesn’t add much value in terms of education.” So then, why do it? What should they post? I write many posts every week that thousands of people read and share that are educational. You could do the same. Explaining the reality of cancer, especially stage 4, which is so misunderstood, is education. There is so much out there that does NOTHING to educate. So why not use those words to explain even basic cancer information? So many are ill-informed about what stage vs. grade mean, what metastasis means, how to treat different ones, and even that breast cancer that metastasizes to the liver is not the same as liver cancer, for example.

      I’m not saying everyone has to use their FB page to cram info down others’ throats, but if you are going to make a post about education, how about doing just that? Share a favorite breast cancer philanthropy? Talk about as a woman with stage 4 cancer, what do you find most helpful in your daily life? Those are things that don’t have to be major but are still a better use of space than “what color is your underwear?” Myth-busting about cancer is always needed.

      As you say, people don’t have access to health care, insurance companies are less than perfect. So why not use FB to educate people about those? I don’t let things roll when there is a chance to ask people to re-examine exactly HOW those posts educate and help awareness. The topics you have brought up are perfect examples of ones that would be far more successful in education/awareness.

      • Nicole says:

        I didn’t see anywhere that the intent of the “game” was education. It was a tool to try and raise awareness. The pink ribbon doesn’t educate, it’s just a tool, a tiny piece of fabric. Wearing jeans on Jeans for Genes day is the same. The jeans themselves don’t do anything (although I get that with both, you’re perhaps supposed to make a donation, the donation then supports research).
        I appreciate your suggestions on how to use Facebook (or any social media platform). It got me to thinking (and doing a mini mental audit) on how I’ve been using my footprint. It’s two parts pictures (look at me skiing, eating out with my friends – having stage IV cancer doesn’t mean I can’t have fun). Another two parts news I’ve found interesting (Huff Po article on Lance / Oprah interview, NYT op ed from previous Australian PM on gun control). One part things that make me smile (picture of a boy who’s father turned his wheelchair into an ice cream truck for a Halloween costume). I do occasionally post the type of things you describe. Sometimes I’m just plain frivolous.
        Lisa it seems like you were really angry about the email, and perhaps my response (above and here) has made you more so. That was certainly not my intention. And I don’t think it was the intention of the “game” initiators, or players. Does that mean you shouldn’t call them on it? No. I was just sharing my response to the situation, which is to usually think about the shades of grey, rather than the black and white of things. I don’t think either response is more right, or more wrong. Just different.
        I wish you all my very best (particularly with those hands and feet, I know how painful that can be).
        Nicole

    • Anonymous says:

      Thank you, finally some one is putting things in prospective. My mom was affected by breast cancer, I don’t think that its a game. I am also a 16 year old kid, who is just that a kid. I think that the Facebook status is a fine way to spread awareness with teens. Maybe not to adults there are better ways but for teenagers it gets them asking questions and sets up a dialog. Yes the way people are doing it and the way the message was done was not the best. But my Mom who survived cancer and has friends who didn’t, thinks its a fun way for teens to spread awareness. Thats who it is for, teens who want to do something.
      So people stop hating and if you have a better idea I’m all ears but its getting the word out there. what are you doing to help.

      • Sus says:

        “fun way for teens to spread awareness. Thats who it is for, teens who want to do something.”

        Fun? Are you kidding me? What was fun about your mum’s experience? Please tell me because I missed out on the “fun” during chemo, radiation and two mastectomies. What’s fun about being terrorized that the cancer is going to come back? What’s fun about watching friends die of breast cancer?

        You want to do something? How about volunteering at a cancer center? How about mowing a lawn for someone going through chemo? “Doing something” isn’t sharing a post on FB. Please, don’t do anything if that’s your definition of “doing something”.

      • sunil noronha says:

        Hey teen! While the honesty about why you like it is awesome, you and I know both know the cultural value of the exercise, especially when it’s to “confuse the boys”. If it takes empty statuses to make such a large point perhaps the hole needs to be dug digger? There’s no desperation of methods yet to spread awareness so meaninglessly. I’ve asked people who posted the same things about why they also post it in the name of breast cancer and why they may as well not post educative links about practical steps and awareness of what it really is. Posting a status about your single-or-not status doesn’t help. It only gives you a little, some emotional profit, and you have some fun in the end. That’s all that gets done in the end.

    • agreed says:

      Well said

  • sallybr says:

    Shared this on my Facebook page. Just found your blog today, I am so glad I did!

  • I hate all this stuff now too. I never understood before I was diagnosed how nauseating the “pink” shit becomes too. I always urge people to check out the documentary “Pink Ribbons, Inc” to see just how far it has all gone. I have to remind myself that people mean well, they just don’t understand. Even my friends are still gung ho for it all and don’t understand why I’m not that enthusiatic. FB games are all stupid IMO. I even hate it when people invite me to play Farmville etc. I’ve got better things to do thank you.

  • Cathy says:

    Thank you, Lisa! I have always thought this, but never could state this as eloquently as you did, I will be sharing your post. Bless you!

  • Lisa, thank you for this rant! This sort of crap fits in with the plethora of things that well-meaning people do that hurt rather than heal.

  • Gail says:

    I am a newly diagnosis breast cancer patient, stage one and my prognosis is good, but I’ve just started seeing this year’s facebook “game” status posts and they make me grumpier than anything has since my diagnosis.

  • Paula says:

    I loved this post because I totally agree about the idiotic Facebook games, pink ribbons, and statuses where our participation supposedly determines whether or not we care about a cause. But I do think that if a person hasn’t had cancer themselves or experienced it through a loved one, it’s very hard to get that person to really understand. Cancer itself isn’t a game to these guys, and they probably do want to help in some way. But explaining or trying to educate them often doesn’t work unless it becomes a first-hand experience. Of course there are exceptions. But the people who most gain from education (and are usually incredibly grateful for it) are those who are just getting a diagnosis for themselves or loved one (and every day thereafter). We might not be able to get through to the cheerful Facebook posters who naively think their games will change the world (and I’m glad for anyone who never has to experience cancer first-hand); but unfortunately, cancer has become so common that it does eventually affect most people and families. And that’s when education and support are the most needed and valued.

  • Gail says:

    Lisa, I was thinking about your comments about the absurdity of leaving men out of this silly little FB game while women have their fun. You are so right. Since my diagnosis, one of my friends told me that she hates mammograms, because they are so uncomfortable and had about decided to cut back to getting them every other year. Her husband is the one who was aware enough to nag her to continue to get them yearly. Now she knows that my stage one, 2 cm invasive tumor would not have been caught early without mammography. It is deep and even my doctor didn’t detect it in a physical exam two weeks before my mammogram. Hooray for my friend’s husband! And I am relying on support and help from my husband and son, while my elderly widowed father is terribly worried. These four men are a lot more aware than anyone posting silly Facebook statuses.

  • Anonymous says:

    I mean no disrespect in any way, being a daughter and niece of cancer survivors (and an unfortunate and devastating non-survivor), but I think people, especially young girls, are just trying to rally around amazing woman (and families) such as yourself. Maybe instead of putting them down, explain how they can help.

    • dglassme says:

      BEWARE Rant to follow: We need to “cure it not aWear it” like some fashion show. I’m sure the gestures are well intended but, are misdirected if the very people who have the disease disapprove. Marketing campaigns and groups have popped up out of every crevasse, spiraling out of control like a viral infection making it very unclear who’s campaign really helps vs rides the backs of those in a helpless situation. There are women all over the world dying from the disease and more effort is being put into pink this-and-that then the actual cure. The desperately needed research that all this money is SUPPOSED to be for is going to the fanfare of it all, washing it’s true intent. And more GAMES doesn’t help the issue, it further deludes the truth, this is a deadly disease that we desperately need to get in front of. It’s not rosy and pink, it grows like mold. My mother too, attended these fanfares and would rock in the chairs set alongside the track as she was unable to walk. My mother had METS (note past tense, and note there is NO cure), she too was naive not understanding all this rocking wasn’t going toward finding her cure.

      We don’t want to see all the mutilated pets, because we are a soft people and seek joy not pain in our lives. If we could turn ourselves inside out you’d see we too are not appealing when viewed from the inside. Play a game to find out where the billions of dollars being raised are going. Play a percent game that evaluates a specific campaign or organization showing their true financial accounting colors. Problem is, this is not a game everyone will understand, it is easier to think about our disease in a sexual connotation, bras, underwear, relationships…really.

  • C Claxton says:

    Lisa, i am sorry to hear of your battle against breast cancer and i wish you all the luck and strength to beat it.

    I completely agree cancer is not a game and there should be a lot more done to help educate others to diagnose symptons at early stages. However i must disagree with your dislike of these posts. It is to raise awareness, not to educate or be insulting or hurtful to others. Yes, some people thing its a game who havent experienced the hardship of what cancer can do to your life/family/friends.

    Far too many members of my family have had/have cancer, many did not survive the battle and others have, in particular i am so grateful that my mother survived her fight against breast cancer 11 years ago. Because of her I am very aware of cancer, all the nasties, but I am also aware of symptons that can be serious problems.

    As I’ ve said these posts are about raising awareness, so I dont bother hiding it from men what they are about. If simply posting a status gets the attention of people and gets them to google breast cancer and then maybe other cancer and in the end maybe they will learn something new or perhaps feel the urge to donate some money, how can that be a bad thing?

    yes cancer is not a game, i wish it didnt exist but for there to be a cure available for all the different variations, people need to help out in whatever way they can whether thats with their intellect or with their wallets. Making something seem a little fun, makes more people join in which means more people are aware, and that, i think, is the whole point of the statuses.

    As for educating people, i have to say this the best advert i have ever seen on TV and there needs to be more like this.

    • I’ll go through this one more time. Even with all of your awareness, clearly there is more to be done. I guess the FB game didn’t work for you in education after all: I cannot “beat” my breast cancer. It’s stage 4. It’s not curable. So already we show that the “awareness” of a Facebook game leaves something to be desired.

      If you can show me that a FB game actually results in people Googling breast cancer, I’d love to see that. How the color of your underwear or where you leave your purse can’t possibly lead to people wanting to be educated. Your desire to make cancer “a little fun” is exactly the point. That’s insulting to someone like me who is dying of it. It’s not fun.

      I’m glad that your mom has had good fortune to be doing well, but how these games have an actual, documented effect on behavior of donation or knowledge is mere fantasy people use to justify their behavior that not only are they not doing harm, they are doing good.

      • C Claxton says:

        Oh i am sorry to hear that. I won’t lie I was very young when my mother was diagnosed and a lot of what was explained to me didn’t really sink in. Since that time, I haven’t really looked into the different stages and what they mean because if im honest it scares me.

        I can’t show you proof of the FB statuses resulting in people searching it but assuming most people of my generation are similar to me; when I dont know an answer and I’m too embarrassed or lazy, to ask for the answer, I search it. That’s how I found out about the bra status, I asked google ‘why are people writting colours on facebook?’ and it told me. I read a few articles about the facebook statuses and got distracted by other links on the page to breast cancer, eventually ending up on the breast cancer uk website on the fundraising and events tab, where I signed up for that years ‘race for life’ and raised ~£350. All because a few friends posted colours as their status which got my attention.
        Yes, I am only one person and that doesnt mean everyone else had the same experience as me but people like to think every little helps ..

        Sorry if my postings have caused you any unneccessary pain or anger. I did not mean any harm or good by them.

        • I think you have proven my point right there. You “haven’t looked into the different stages and what they mean…” So wouldn’t reading a post about the stages of cancer be more educational? I can understand you are afraid. But don’t let that stand in the way of getting your screenings and doing self-exams. I’m glad you were able to raise money for the cause but honestly, learning about the disease is one really important way to contribute too. I wish you good health. Thanks for reading.

      • Sharon Letchford says:

        Lisa, I also feel that there is an element of ‘glamourisation’ of breast cancer. At a recent women’s health evening at which a doctor and I spoke – she about women’s health issues in general and me about my journey with anal cancer – the doc and I had a conversation afterwards about people focussing on breast cancer because it’s about breasts. In her words, it’s ‘sexy’ whereas bowels and lungs and anuses just aren’t. Threr’s nothing ‘sexy’ about cancer, of course, it’s debilitating, embarrassing, and often fatal. This is something I tried to get across in my talk. I wonder – do you think breast cancer has been ‘glamourised’ and if so, is there a link with these sorts of games?

  • julie says:

    I ignored my message i just found in my inbox. I lost a dear Aunty from breast cancer & i think these things are just silly & disrespectful of women & men who have breast cancer and putting up the hard fight just to stay alive. I don’t think they mean any harm & maybe think it’s there way of supporting it but i still don’t participate.

  • Chani says:

    Well said. I hope you don’t mind, but I’m sending this link to everyone who sends me one of those messages. Thank you

  • Dorvell says:

    Call me crazy, but I’d argue that Breast Cancer doesn’t really need more awareness; We all know it exists, to the point that it has overshadowed almost every form of cancer out there.

    That aside, I despise those games with a burning passion, too! It’s slactivism at its finest!

    Wishing you all the best in your fight with this aweful disease, Lisa!

  • Wall flower says:

    I can’t say I understand this disease since I am only 21 and never had anyone close to me diagnosed. I hate those pages too, ( like this if you hate child abuse!) etc. Makes me feel uncomfortable and I usually ignore them. But something about this message caught my attention. I immediately thought to myself, “Another chain letter type message.” And pushed it out of my mind. But later as I was enjoying my “me time”, with my son asleep it began to thump around in my thoughts and just for the heck of it I decided to google this game to see what it’s about. I immediately came across this negative page and after reading the post and responses I decided to research further. Where I skimmed through pages about chances of developing breast cancer etc. Then train of thought lead me to wonder,” How important are self examinations, how would I even perform one, when should women begin exams etc. And from there I gave myself my first self breast exam. And plan to schedule my first mammogram. Sure these messages themselves aren’t informative, but isn’t it possible that that cute little chain message can lead young women like me to further research into the all too real, not cute at all disease that has a higher mortality rate than I previously imagined? And a high chance of developing at about 12% or 1 in 8 based on what I’ve read. Of course this disease is all too real for you. But not for some women like me who thought to myself, “I’m too young to have to worry about things like that.” Or,” The chance is probably low since I don’t have any close family members who had it.” Or,” They say mammograms can actually cause cancer so I’d probably be better off avoiding them.” And I can’t stress enough that I mean no disrespect and definitely don’t want to imply that I even have a shred of understanding of the hardships and struggles you probably face daily and my prayers go out to you and any that have become a little too familiar with this disease. And as much as you and others demonize this “Game” the fact of the matter is, I’m sure I’m not the only one who’s learned more because of this message. And if it encourages earlier detection in more women, which from what I’ve read is a huge factor in beating this thing. Then how is it a bad thing? Perhaps it’s something I’ll never understand unless its experienced. And I hope I’ll never have to.

  • Susan says:

    You are right Wall Flower. As long as YOU learned something through the stupid Facebook games, all is well. The people who have gone through chemo, disfiguring surgeries and radiation have to suck it up because people are not capable of learning anything about cancer unless they learn it in a cutesy way.

    Should I send you my double mastectomy photos? They are way cute!!! I can hear you gushing now. The people dying because their cancer came back aren’t going to mind the cute games after they die so who cares.

    I hope you never understand. Because if it takes having to have your breasts cut off and to go through chemo and then watch your children watch you die to understand how cute games are hurtful to the people dying and suffering from this disease, I don’t want you to understand.

    Unbelievable. Lisa writes this excellent post explaining exactly why this is so offensive and people are still leaving comments about how the cute game made them read and learn about breast cancer. Are they living in a bubble or what?

  • Laura says:

    perfectly stated. sharing this on my FB page

  • Trina says:

    EXACTLY my thoughts…This type of thing irks me to no end. If people want to help and actually care then actions speak louder than words (facebook games). People need a serious reality check. This just started again today except its for “going on vacation” for a certain period of time. Ridiculous, insensitive and ignorant. Prayers for your battle.

  • Dee says:

    I am so sorry that all you breast cancer patients are struggling. As a nurse, I do t think CA is funny. I really did t think those FB “games” we’re for you. I think they are aimed at all those out there to remember it exists, keep it in your thoughts, support those fighting the fight and donate to research. I think you are forgetting that humor can be a good tool in fighting all CA. I understand you are bitter and angry that u have CA but I hope u use some humor to deal with yor fight. Coming down on people heavy and guilting them does not achieve the desired goal either.

  • Liz says:

    I have participated this year and in previous years because friends (some still survivors, some not) have invited me to do so. It is not everyone’s cup of tea but I am happy to do what I can to show support at a personal level for my friends in whatever way they ask for it. Maybe they are misguided. I don’t care – what they feel and want is more important to me.

  • Michlelle says:

    I’m having my first mammogram today because of the post I received. I’m sorry that you are so offended by the “game”, but I just didn’t feel that way. I think it is just a clever way to get something spread to the public. If I do happen to be diagnosed with cancer, I don’t think I will feel any differently. I would be grateful to have that extra reminder to take preventative measures in my breast health. I really am sorry that you have been offended, and I wish you all the best in your recovery.
    Sincerely,
    Michelle

    • Susan says:

      I’m glad you are having a mammogram. Hopefully it will be fine.

      Your comment proves Lisa’s point perfectly. You do not “recover” from stage 4 breast cancer.

  • Sharon Letchford says:

    Thank you Lisa for sharing this. These games have annoyed me for ages. Earlier this week I shared it with a group of women at a women’s health night at which I spoke about my own struggles with cancer and have today posted it as a link to a Facebook note I wrote about that event.

  • Lina says:

    i have a family member, as well as some old (distant) friends on my Facebook who spread this. I dread October because of these “games”, and because of all of the pink-washing. I’m not shy about calling things as I see them, and will (and have) posting harsh rants on my wall to argue against these offensive games, and in favour of REAL action.

    I have an idea to spread a post with hard facts on breast cancer, as well as instructions on how to perform a self breast exam, all in order to combat the slacktivism that runs rampant in that month.

  • porntupex says:

    Normally I don’t learn post on blogs, but I would like to say that this write-up very forced me to take a look at and do it! Your writing taste has been surprised me. Thank you, very nice article.

  • Lauren Magoon says:

    Bravo…I have some different health issues that have also prompted these status posts on FB. Whether you deal with cancer or crippling depression or anything else, it is most certainly not a game for the ill person or anyone around them. Thank you for expressing that idea so directly & for sharing it with the rest of us. I sincerely hope you are able to beat your cancer & my thoughts will be with you & your support group (by that I mean family, friends, Dr’s etc). Thank you again!

  • Thank you so much! I have always disliked seeing this in status’. It does not help those who are stricken with cancer!

    I am sharing your blog.

    Thank you again for putting into words what I haven’t been able to say as eloquently!

  • betty says:

    whaaaa.. it’s not intended to make fun of breast cancer you all need to get a grip and lighten up gees..

  • Michelle says:

    May you be blessed during this very difficult time. Thank you for your insight. I have not had cancer, thank the goddess, but my mom had stage 3, non small cell, lung cancer- inoperable. And from talking to her I believe she agrees with you regarding the silliness of the above mentioned “game”.

    Anyway, more than anything, I just wanted to say that I am sending prayers and healing to you. May you pull through this with all the dignity and grace you have shown in this post and more.

    There is hope.

    Blessed be.

  • Tasha Lei says:

    A lovely young lady named Charlotte shared this with me, and I can’t thank her enough. I got this same e-mail in my inbox today about three minutes after being notified that a wonderful lady who’d been like a second mother to me growing up had died after a three-year fight with breast cancer that metastasized into her spine and brain. She spent the last three weeks screaming for her deceased mother to come take the pain away and make it stop hurting, and then I get this crap from one of those new-age chicks that think they’re saving the world by sharing a post and making light of the suffering of others. I replied to her inane e-mail with a link to your post. I hope she and the others on her little list read it and learn something.

  • Reagan says:

    Whilst you have my heartfelt sympathies, those of you who have been touched in some way by cancer in the past or are doing battle with it currently, I have another perspective. I am lucky enough not to have been in such a situation so have very little knowledge on the subject. When friends post things, such as this facebook game, online I come face to face with it and I’m not talking about in a ‘lets lighten the mood about breast cancer’ way – The second thing I did when I read the ‘game’ post on facebook, after adding my own response post into the mix, was to go and look up exactly how to check your own breasts for signs of the disease. I’m not sure the campaign is designed to lend support to sufferers, I believe it is designed to make those who don’t know much about it curious enough to find out. If this campaign means even ONE person learns how to detect the early signs and acts on them then it will have been worth it.

  • lynn says:

    Breast cancer has affected many people in my family and I don’t see anything wrong with people coming together (even if its on facebook) to help create awareness. Some people who might not have known know now becauce they participated and took the time to see why its important. Cancer is scary and very important but there is no need to be so serious all the time and down. when you feel good. My grandmother passed away from cancer and whenever she felt good she would do amazing things, travel and yes participate in the stupid facebook posts… im mean really don’t you have anything better to do than rant on about facebook posts… if you don’t like it don’t participate other wise your just whining.

  • kathleen Harle says:

    Of course you can speak out if you disagree Lisa, but I don’t think anyone sharing it thinks Cancer is a game, you may find it offensive which is your prerogative, but others do see it as a way of showing support, however silly! In truth most people I know have loved ones who are suffering or have passed from the disease and no-one thinks cancer if funny at all and no-one is trying to cause you or others any offence. My thoughts are with you.

  • Annabel says:

    Bravo Lisa,
    My mother passed away after a 22 year battle with breast cancer and I find these posts insensitive and offensive. People are already aware of breast cancer so making jokey posts is not going to change that. If they are so concerned, why don’t they make a donation to charity instead.
    Thank you for articulating so well how these games trivialise a very serious disease.

  • Janine says:

    STOP think about it for a minute – everyone has a valid point – as all of this page EVERYONE is ‘talking’ and aware

  • Fran Rawson says:

    Quite right too and I’ve shared x

  • Claire D says:

    Very sorry to hear of your illness and thanks for articulating why these statuses are so annoying. I have never shared them and the sexual innuendo angle to them is insensitive. I don’t think for one minute that even ONE person has thought’ ooh, must go and find out the signs of breast cancer’ because I’ve seen a cryptic post on my Facebook wall!’

  • Lindsey says:

    I’m sorry the ‘game’ upsets you so much and I do understand your reaction however, surely anything that brings awareness and raises the topic of breast cancer is a good thing – I would have thought most people realise they are not doing anything to raise money but if it reminds someone to check their breasts when they see someone’s silly status then it’s done something for the cause. I also know it seems sexist only sending this to women but in a way it makes men talk about it if only to find out what people are talking about. The game isn’t going to cure anything but it is a tool no matter how small that could raise awareness and who knows how many people that could help.

  • I nearly lost my mother to a particularly aggressive form of breast cancer two years ago. Five years ago my best friend was killed by a cancerous brain tumour. My aunt died of ovarian cancer when she was 30, and my Mum has recently lost a much-loved cousin to pancreatic cancer.

    I myself have had two cervical cancer scares, and was lucky that my body was able to absorb the precancerous cells back into itself. I might not be so lucky another time.

    And people wonder why I find thee Facebook “games” distressing?

    I’ll be sharing this blog on my wall, and wish you the best.

    Gemma xx

  • Peter says:

    I fail to see how it’s that much of a problem for you to be honest, if your frustrated with the lack of awareness on breast cancer then do something positive about it, u don’t have to join the silly game if it offends u so much but remember offence is taken not given!
    They’re not poking fun at cancer sufferer’s so playing a silly game is hardly derogatory to the cause at all and for you to think this is draconian and part of the wider problem of why greater publicity is needed because of sensible brigade!

    At the end of the day people are fickle and unfortunately tune out the same old same old, so people have to think of other ways to bring things to their attention, if you feel so strongly about this not being the right way, don’t play, simple.
    But don’t sit in your ivory tower and criticise, just do your own worth while endeavours and help bring more awareness if you feel so strongly about it.

    • Margy Hill says:

      Good reply Peter – I felt quite depressed by the comment – yes the games are silly – but…I’ll be damned if cancer was going to take away my sense of fun – it took most everything else away! I will not let it make me bitter – this made me somewhat angry – now i guess I’ll have to spend the rest of the day getting past it, young people – and how they deal with cancer – are a breath of fresh air – even though if they actually have it, it’s often very aggressive – I live near to a children’s hospice – the place is full of laughter and happiness, so people are drawn towards it and want to help – if it was sombre, and quiet – I think there wouldn’t be nearly so much support! Thanks for writing this.

  • Margy Hill says:

    I understand totally how you feel about this – and my heart goes out to you when reading of your Stage 4 Cancer. If someone has not been touched by cancer, they do not know the life change it brings – before I had cancer – I had lumps and bumps – NEVER thought it could be cancer – if someone is cancer naive – I hope they stay that way – but having experienced cancer I would never be without the experience because my view on life is so different. A view of cancer is based on life experience and perspective – it is more talked about than ever before – therefore encouraging people to take an interest and a positive attitude to helping find answers and cures – a raised awareness is surely a good thing? Cancer sufferers are not going to be helped if people are scared and believe as they always did that it’s automatically a death sentence – awareness comes from bringing it closer to people without them running a mile from it – how can you expect someone to REALLY know the experience of cancer unless they’re going through it? Would you rather tell them all about/burden them with the hideous side effects – and late-effects of treatment, and be hostile towards them – in a ‘you don’t know what it’s like’ way – or do you want them to spread awareness in the fact that it affects nearly all of us in some way – and gain their support? I know that one of the girls who posted this ‘game’ on FB lost both her grandparents to cancer, within a year – she saw how much they suffered, she was heartbroken – but she was not afraid of it – she went to see them every day and helped look after them – you cannot expect a young person full of life to really appreciate what the treatment/pain/fatigue is like – why on earth would you want them to? Why do you want people to look at you and see how much you are suffering? People full of life and fun are my motivation – I refuse to let cancer limit me mentally – I don’t like fighting talk such as ‘beating cancer’ – some people don’t beat it – but – I had it, I accepted i had it, and i changed and adapted my life accordingly. If you don’t want to join in – like Peter above says – don’t! it’s that simple! If i couldn’t have had a laugh about cancer I know i would not be here now. Don’t give cancer the import it often commands, give importance to getting through it – spiritually if not physically. My cancer was Stage 3 colorectal cancer, and I contracted MRSA/C Difficile/adrenal fatigue, my treatment was over 2 years, i was not expected to make it – my husband had colon cancer – I have a colostomy he has an ileostomy – we looked after my mum till she died of pancreatic cancer, his sister had the same, my brother-in-law died young of lung cancer – I looked after him – my best mate died of the same thing, my online FB buddy has just died of Ovarian cancer (we met on an online cancer survivors 6 week workshop run by MacMillan and Stansford Uni – I believe she actually introduced me to one of these games originally – she knew she would not survive long but her enjoyment of life, her zest – shall remember it forever) Another friend is nursing her mum in the latter stages of cancer – I am expecting a phonecall any time, my cousin at 50 suffers melanoma. I feel privileged to have known and also nursed some of these people – we’ve had a few good laughs along the way – alot of sadness too – but alot of closeness.
    Everyone has their own perspective on how it affects them – but it’s a matter of choice as to how you deal with it – it’s choice as to whether you participate in certain things not in others – whatever ‘floats your boat’ surely? I do NOT want people treading on eggshells around me – I’m really pleased that my young friend asked me to participate – she knows what we’ve been through but she doesn’t avoid involving us for fear it may offend – and i don’t want her to. It’s her way of making people aware, she is not being flippant, she is bringing cancer into the light – there’s a difference.

  • Guro says:

    I wholeheartedly agree with you. I always found these types of games riddiculous, because how on earth are people supposed to get more aware by reading secret code words in a facebook status? If people want to actually raise awareness there are plenty of better ways of doing it, like urging friends to examine themselves, posting guides on how to do so, link to places where people can donate to the cause, etc.

  • VickyP says:

    Of course cancer is a serious subject and affects so many different people (the patient, family, friends). All these people deal with things in different ways and react to different forms of comfort or awareness.
    A mixture of fun and serious initiatives help to get as many people involved as possible, maximising awareness and in turn helping to beat this horrible disease and support those going though it.
    So even if it’s a silly game on Facebook that gets someone to check their breasts, go to the doctors for a check up or donate to charity surely that’s a good thing.
    I personally haven’t been part of the Facbook game but some people need this so let them have it, every little helps. x

  • Joanne Campbell says:

    I understand breast cancer is not a game, I also know from experience neither is cervical & womb cancer, 22 yrs in remission this yr, but awareness needs to be raised too many women & men are not being diagnosed in time, I was one of the lucky ones. I have 3 very good facebook friends 1 just about to have double mastectomy stage 4 the other has melanomas & 1 just diagnosed, have just lost 2 more fb friends through cancer, if it hadn’t been for the one poster doing the rounds the one friend just diagnosed would not have gone to the drs, would not have discovered that she had lymphoma. I can understand your point of view, and other peoples views but unless its “out there” who’s going to say hey honey that doesn’t look right lets get it checked out, how many more loved ones are we going to lose. Dad 11-09-1983 cancer bronchial tubes. Maggie 1974 Breast cancer with secondary lymphoma. Charlie 1987 prostrate cancer. Grandad 1954 stomach cancer. These are just a few of my family members that I have lost along the way, & now bowel cancer rears its ugly head, stage 2, I will be support to anyone of my friends & family through any illness & smile through my own pain & treatment but I will not have it said that I don’t care, I wish you well in your journey.

  • Nicola says:

    I was just incensed by this year’s nonsense in a Facebook group I’m relatively new in and is work related so hesitated over being annoyed publicly by.then I just had to voice it but blogged more fully on.well meant idiocy! the fb group went silent.I’m not sure if that means they agree with me or the person who posted it!

  • So pleased you wrote this Lisa.

    The link to your article is now on my facebook page, having received one of these ridiculous requests recently and knowing a relative that has recently been diagnosed.
    These time wasting games ‘service the fb status makers need to be seen to be altruistic’ and do very little else.

  • Louise Suvari says:

    I have to say I’m fed up with them too. Share if you wish breast cancer didn’t exist, share if you care. I wish they’d all get lost. To be constantly reminded is a pain. My Mother died from a very Aggressive form of Breast Cancer and she went through hell. I hate cancer and I don’t need to feel pressurized to post about the Dam thing on my status update either. This doesn’t mean I don’t care. This means every time someone puts stupid updates about ‘ if you don’t share you don’t wish it didn’t exist’ or ‘I survived share if u hate cancer’. I won’t share it… Because my Mother didn’t survive and it reminds me of that Fact and of the pain she went through. It reminds me of the Loss and emptiness I feel everyday without her.

    • Nicky Munro says:

      My comment is this…my Dad died from male breast cancer aged 64…2 years ago…I have also been tested because of symptoms…however I am clear…but have to undergo further testing. I don’t think the facebook is a game!!! I think people support this and are trying to show that!!! It is not a game!!! People give financial support when they are able…and otherwise show their support!!! X

  • tb says:

    Wow, I’m so sorry to hear that you have S4 cancer. I understand how the FB status updates could be seen as disrespectful. I don’t know anyone personally who views it as a game, rather to show support and raise awareness. You’re right, everyone knows cancer exists – but it’s not always something people think about if not directly effected. For me it is a reminder to educate myself – there are lots of links to blogs and posts like this – and without this ‘game’ I would have not stumbled across this article and vaccinations would have never crossed my mind. Of course it would be great if people just read this information without being prompted. I don’t think it’s all negative publicity. (I have family with cancer also). X

  • Mandy Glynn says:

    Thanks for this. I was beginning to think it had gone away, but these useless posts keep being reinvented. I’m now going to post/share THIS information in reply. Good luck with your battle & I hope you’re winning the fight against breast cancer xxx

  • Deirdre S says:

    I just fell for one of these statuses which led me to Google some things and I found this site. I’ve read some of the comments and learned a lot about how some survivors feel about the pink ribbons and all. After this I’m going to Google breast cancer awareness and see what I can really do to help besides donate money since I have none. So something good did come out of that. I read where someone said the statement “cancer is a gift” is silly. I am a burn victim survivor as a result of domestic violence. I had 2nd and 3rd degree burns on 45% of my body. I am severely scarred for life outside and in. But something beautiful came out of it. I realized I am worth saving and that God loves me. I realized my family loves me. And even though I look like a completely different person I’ve become a better person. I hare it happened but the end results on my spirit were wonderful

  • Barbara Baker says:

    Blessings upon Blessings to you, Lisa! I posted this today, April 1, 2014, on my Facebook page……

    BREAST CANCER AWARENESS ~ Games Not Included!

    So today I was innocently caught up in the 2014 Breast Cancer Awareness Game! To say the least, it did not set well with me. To be honest, it upset me. But it caused me to stop and figure out why I reacted the way I did when I usually just pass on most of the other silly games/postings on Facebook. Or they seem innocently cute or funny with no or little harm done.

    My first thought was that I shouldn’t have to basically “make a fool of myself” or sneakily be conned into something in order to be aware of or support a cause. My opinion is that the game this year has just gone too far and sneaky at that. Turning your profile pic “pink” or posting your bra color is one thing ~ this game is another!

    Secondly, my fiancé lost his beautiful wife of 45 to breast cancer and watched his 12 year old son lose his mother. He suffered alongside her and supported her for four years in a way most of us will never experience ~ I will forego any detail.

    So at that, I decided to spend my energy doing some research on the games and found, as in most cases, there are people on both sides of the fence and that is fine. I just won’t participate. I do think that there were more of us who find it unnecessary and nothing funny about it. There are better ways to support awareness even if on Facebook.

    In my pages of reading, I came across Lisa Adams’ Blog (Stage IV breast cancer victim who has blogged about her entire journey along the way). Talk about bringing about awareness! She wrote her initial entry about Breast Cancer Facebook games in January, 2013, and followed up again in October, 2013. There are many, many reactions posted to her blog that you can also read that express my sentiments as well.

    So this will be my 2014 BREAST CANCER AWARENESS message to my friends ~ women and men!

    http://lisabadams.com/2013/01/17/breast-cancer-is-not-a-facebook-status-game/

  • […] P.S. – Even before this post was complete, feedback starting rolling in. A friend expressed concern about the ineffectiveness of Facebook “games” to bringing awareness to Breast Cancer. Here is the link to a blog by a Terminal Cancer Patient on this topic:  […]

  • […] don’t. Lisa Bonchek Adams, a woman who has been fighting breast cancer for years, has written two posts that summarize my feelings of frustration at slacktivism that I am unable to eloquently […]

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