So this is what happened early 2013 or late 2012, can’t remember exactly. Point is, it was a long time ago, when I was still in my post-treatment, semi-depressed, white-hot angry about cancer culture phase, and was new to cancer social media. I’m admitting here I’ve held onto this negativity. Continue reading “My Oncologist Can Beat Up Your Oncologist – The Disease Olympics Part 3”
OK, Part 2 has 2 heads, how appropriate. See Part 1 here.
Where to start?! I’ll just plunge in with inter-disease races first then move on to the intra-cancer comparisons. Please note, that while this post is going to be critical of how other illness advocates present their message, I am so NOT saying their messages are not valid. Indeed they are valid, but the lack of knowledge and understanding is distracting for me, so I’m calling it out.
My annoyance with the disease comparisons spiked over a year ago (or 2 years?) when I saw this screen grab of a tweet from a comedian I’d never really heard of. It set me off because of the fight language and the blame issue. Puh-leeze. I’ve written enough about how people with cancer are blamed, and so have others (see Blaming the Cancer Patient). My first thought was, has he never spoken to a lung cancer patient? What is the first thing lung cancer patients hear? “Oh did you smoke?” News alert! That is blaming at its finest, most insidious! And we blame cancer when someone dies do we? Um, no. If that were true the headlines would always read: “Cancer Kills Another Pop Star”, rather than the one we nearly ALWAYS see: “So and So Lost Their Battle with Cancer.” Language, word choice and placement matter greatly. But perhaps I’m being too harsh on this guy. Maybe it’s only when we live here in CancerLand that we notice these subtle language gymnastics.
My frustration with the mental illness awareness campaigns intensified even more when “Supernatural” star Jared Padalecki, in a “People” magazine interview promoting his new charity, said, “If somebody has cancer, they’re not embarrassed to have cancer – they know it’s not their fault. They know it’s a struggle. But, for some reason, if someone says they’re depressed, they assume that people are going to look at them like they have three heads.” Again with this bizarre notion that cancer patients are universally supported and never blamed, do not suffer from feelings of self-blame. Again I wonder if Padalecki even knows any lung cancer patients, who are notoriously blamed for their predicament.
At the bottom of this post I include a few links to articles about cancer patients and guilt/self-blame—it isn’t just me who blamed myself. As I noted in my “Did You?” post ages ago, we are bombarded with headlines on magazines, or just any media at all with quotes like: “eat this magic food to prevent these kinds of cancers”, or “50% of all cancers are preventable by modifying diet and exercise,” (it is Otis Brawley, Chief Medical Officer of the American Cancer Society who often says something like that). Cancer patients “know it’s not their fault”????!!! Really????!!! I guess big stars live in a bubble and don’t read headlines on magazines in grocery check-out lines. Because it was those headlines while waiting in lines that really contributed to some of my post-treatment depression, my constant self blame.
Look, I agree, mental illness has a stigma. In writing this post I pondered whether to reveal the fact I’ve been on medication before and after my own cancer diagnosis for mild depression—I’ve been on it for years. I figured people would think 1) that my depression is why I’m a Curmudgeon (no, I’m medicated and still like this) and 2) I’m trying to validate my stance by saying I’m part of the mental illness community. I’m not; I’m merely trying to consider this from all angles.
But here is what I suspect is going on, and I might be 100% wrong. The messages of “if we have not been personally touched by cancer we know someone who has” have convinced society that everyone “knows” cancer. That really isn’t the same thing—a lesson that crashed down on my head soon after my own diagnosis. For me, and I suspect many others, cancer is nothing like the way it is shown in media fiction and PSAs. But now the general public is convinced that cancer patients are never blamed because they are not blamed in the TV ads—and so there is a bizarre disconnect from reality. But that disconnect doesn’t seem to stop spokespersons for other causes from using these falsehoods as a frame of reference to push their own agendas. They buy into the notion that the cancer patient is universally supported by the races and loved ones. They know nothing of the Institutional Knowledge I think comes to a cancer patient who has done a little time in cancer social media circles.
This frame of reference is used to the extreme every February, women’s heart disease awareness month. Sure, the stat about heart disease being more deadly than breast cancer is bandied about all year long, but February is intense. Breast cancer patients and the general population don’t even have time to recover from Pinktober shoving breast cancer down our throats when heart disease spokespeople begin over-using the phrase “breast cancer” all over again. I’ve long suspected the tide is turning in the perceived support for rah-rah Pinktober—there are more and more critiques and complaints about it each year. What does this do to people’s minds, their subconscious? Are they hearing the warnings about heart problems or are they hearing that damned phrase “breast cancer” and turning their mind off? Breast cancer awareness suffers from over-exposure, and this is made worse when advocates for other health issues use that over-exposure to sell their own cause. Gee, thanks a lot.
Still, advocates for heart illness awareness have a point. Breast cancer has wrongfully become a bigger monster in the minds of women than heart disease. Breast cancer organizations AND the medical industry both are directly to blame for this. Early this year I wrote about a new cancer center built in my area dedicated to women’s health, but the advertising was all about breast health. Breast cancer is a proxy for women’s health. No mention of the more deadly heart disease in the magazine article/free advertising I read about the new center. No wonder heart disease advocates are frustrated. Cancer is the boogeyman the health industry uses on us, to the detriment of education about other, more pressing disasters.
Full disclosure, my maternal grandmother was diagnosed with breast cancer as she was hospitalized while dying of heart disease. She was not treated for her cancer, obviously. Both my mother and her sister (the aunt who was diagnosed with breast cancer 2 months before I was) were on blood pressure and other heart-related medications at an age younger than I am now—I am currently not. I always figured heart-blood things were going to be my future. Cancer was not even in my peripheral vision. Just another reason why I always say I was blindsided or sucker punched by breast cancer. So in many ways, my personal story is the opposite of what is considered “the norm”.
Again, I think the heart disease advocates’ message is valid, I’m just frustrated with the way they choose to present it—by using breast cancer. I was told on Twitter just the other day that saying heart disease kills more people does not diminish the breast cancer issue, it is merely an attempt to bring awareness. But the truth is, saying one thing is worse than another is inherently making a competitive comparison. Is heart disease worse in this particular competition, due to its higher body count? Yes. But it still causes me to wince—because as the previous paragraph describes, cancer seems to be the bigger problem for me at this stage of my life.
Please note I’m not taking sides here—everyone is to blame. This situation is just beyond fucked up. And no, I don’t have a solution to offer except: stop using cancer/breast cancer as a tool in your campaigns. The assumptions made about what it’s really like to have cancer are not always accurate. And using breast cancer to make a point, as a frame of reference may not result in directing attention where it needs to go–in the instance of this tired Curmudgeon, I merely stop listening altogether; I wonder how many others do too.
I get tired of seeing graphics created by a variety of organizations saying their disease-afflicted body part is just as important as “boobs” (I hate that word, see Some Word Problems), that their disease is not pink. (Thank you to @bccww for helping me find some of these things and helping with this post!) I know some folks have gotten riled up about it on Facebook. I see both sides of the argument. The advocates for other diseases see all the attention breast cancer gets and are motivated to both strike out at it and use it to get attention for their own cause. Advocates for other kinds of cancer use the tactic too, with the ever-present “Not all cancers are pink”, featuring a ribbon of some other color, associated with the cancer being represented. What everyone fails to realize in these moments is that many breast cancer patients hate Pink, does not recognize those who say repeatedly, cancer is not pink, or the color pink is not the actual cure. I hate the color divides. Sigh.
And with this I turn to the intra-cancer comparisons.
That Pancreatic Cancer Action PSA is a shining example of how frustrating the whole “this kind of cancer is easy, mine is much worse” scenario is. The best response to the whole ad was I Hate Breast Cancer’s line: “If you’re going to wish for breast cancer, make sure you put in a special request for the non-metastatic kind.”
Because guess what, so many people think breast cancer is all solved, never causes death anymore! And yes, I realize the metsters will point out breast cancer is NOT deadly, only metastatic breast cancer is—I’ll deal with one downmanship within breast cancer patients in the next post.
Like the mental illness, heart disease, and all other health issue campaigns, advocates for other cancers have swallowed the Pink Kool-Aid and concluded that all of us with breast cancer are wearing pink feather boas and having some kind of party—or so it seems to me when I see crap like this. I guess this makes it easier to use breast cancer as a scapegoat (see What Is It About Breast Cancer That makes It Everyone’s Scapegoat?
I’ve written about this issue a few times before: Does Breast Cancer Owe It To Other Cancers, First Ribbon Problems, and Want Attention? Just Say Breast Cancer. I’ve probably said most of what I think in those posts, but here is just a little more.
The biggest divide I perceive is between lung cancer and breast cancer—again because of the higher body count lung cancer causes. I once read an article by a woman who had both cancers and unequivocally claimed lung was worse because of the stigma associated with it (I cannot locate it or I’d link it here). She claimed she was never blamed or asked behavioral questions about her breast cancer. Well bully for her, I did not have the same experience. Even with that sentence I see I still have resentment toward her and her article, when it really should be aimed at the public—for asking stupid questions out of fear, out of a need to have imaginary control over their own cancer risks (again, read Did You?—I said all I need to say there). But I remain frustrated at the reinforcement of the idea that no breast cancer patient ever has had to put up with some blame, yes, even when it is significantly less than lung cancer patients. I don’t like anything that does not give a full and clear picture of the truth.
Some time ago I read another piece about the lung cancer stigma, and it was fantastic. It posed the question if lung cancer patients who had smoked deserved less compassion than those who had not, a very scary question and response. I agreed with the author on so many fronts except maybe one. She was a big supporter of all pink races and activities and was not suggesting that breast cancer awareness should tone it down. I’m not so sure about that. I’ve said it before and say it again: awareness is a two-way street. Are the pink-crazed party, oops, I mean, race, organizers at all aware of the fallout they’ve created? The animosity?
I’m not “picking on” lung cancer, I just know it has the higher body count. There is quite a bit of bad blood between breast cancer and gynecological cancers too. A local breast cancer ONLY support organization is called Women Supporting Women. (Disclosure–yes they were good to me upon my own diagnosis, although ultimately I got more support from the center at which I was treated, near my work, not my home.) WSW was founded by a breast cancer survivor for women with breast cancer. They took a beating on Facebook some months ago–several people piping up and asking why there was not a race for kidney, pancreatic, etc, cancer. Their answer was that breast cancer was what they were founded for. I get that, but their name is misleading–at the very least include the gynecological cancers! But I don’t sense change coming anytime soon.
I’ve had people tell me quite bluntly: “If I get to pick, Id (sic) rather get boob cancer. You can live without those and people tread(sic) you with love, caring and compassion when you get that cancer.” People get very angry when breast cancer patients, with our perceived advantages, complain, when we bite the hand that feeds. I used to think yes, breast cancer patients have an obligation to advocate for other kinds of cancer because of the bullying of the Pink ribbon. But these days I don’t think so. Too many have bought into the ideas of breast cancer, and think we are ungrateful (see Burden of Gratitude), and I’m not sure their minds can be changed. I’m sure to get flak for this post too, and I can direct people to all the older posts I’ve written, explaining my ambivalence about this topic, but it will be to no avail. So I ask my questions and expect no answers or solutions.
Breast cancer patients contribute to the misconceptions at times, too. There was an awful piece in HuffPo a couple of years ago—I will not link to it because I am aware that the author of the piece was sorry about the insult to other cancer patients. She did claim however, that some cancers, such as thyroid, are easier than others in terms of treatment and survival. Needless to say the thyroid cancer community roared back in the comments to the point that it became just piling on, with later comments not contributing new insights, just being nasty. Her overall piece, a list of truths or realities one only gets upon actually getting cancer, was quite good—it was a shame the Cancer Olympics got in the way–and yes she put it there.
I’ve also read MANY times breast cancer patients, soooo angry about the sexualization of breast cancer, ask, how about we treat other cancers the same way? It is a tone deaf question, and a foolish one. Many patients with other cancers, lacking a good prognosis due to lack of research, from a lack of—you guessed it—funds from silly sexy breast cancer awareness campaigns, would be oh so glad to have a butt cancer campaign, or whatever, to get the same “status” breast cancer occupies. As much as I hate the sexualization, this is a bad strategy in my book. Again, I explained all of this in Burden of Gratitude. When I see that kind “let’s sexualize prostate cancer” crap I groan–this is exactly why I hate comparing cancer.
Ultimately we all suffer from a common disease: The Grass Is Always Greener On the Other Side of the Fence Disease. Mental Illness patients look to cancer and think all cancer patients get tons of support and no blame—they only see the green grass of having cancer. Heart disease advocates see a disease with a lower incident rate yet higher funding income and just see our green grass. Patients with any other kind of cancer that isn’t breast see our green grass—or pink as the case may be. We breast cancer patients wonder about the greener pastures over on other sides of fences too. None of us completely see the brown, dead grass patches on those other sides. And I think those brown patches are spreading, maybe they’ll be harder to miss.
I’ve written this before but it bears repeating: the high or low body count doesn’t matter to the one doing the dying, or to the ones that love them. I think often of the example of Beastie Boys’ Adam Yauch, who died not long after I completed treatment, of salivary gland cancer. It’s an extremely rare cancer, so it won’t be labeled an epidemic, people won’t make signs and t-shirts exclusively for it; it will merely be lumped into the fights for “all cancers”. But how is that rarity a comfort to his family, to his fans? His death at age 47—a number I’m fast approaching—was still horrible. We can argue about which disease community has it the worst all damn day. The answer will always be not one community—no, it will be the dead, regardless of the cause, and their loved ones. They have it the worst. There’s no competition.
The blame or guilt of cancer patient links as referred to above:
Part 3 is on the way, about how horrible we breast cancer patients can get toward one another.
I first remember hearing the phase “the Cancer/Disease Olympics” during that fracas involving Pancreatic Cancer Action’s “I wish I had breast cancer” PSA back in 2014. I wrote “Want Attention? Just Say Breast Cancer” in response; and included in that blog post is a link that will take you to the video, and more commentary (it reflects my own views; I urge you to research other views your own self). I remember that whole episode got really nasty; I even heard a few people sent death wishes/threats to the pancreatic patient who uttered the line. She did die not long after that, if I remember correctly. Just proves how quickly things get out of hand especially when a subject raises passions.
And what subject is that? Disease/Cancer comparison and competition. I think the “official” definition of Disease Olympics is the competition for limited funding between advocates for diseases: to “win” increased funding for one disease means funding for another decreases. But I think in a more general way Disease Olympics can refer to the game of “who has it worse”, and research funding is just a piece, a large piece, of that picture. I’ve been sitting on a post about all this since early 2013. Two things happened back then: 1) A breast cancer patient I followed on one social media outlet wrote something so upsetting about being competitive with her cancer that I took a hard look at myself and have been doing so ever since, and 2) Journeying Beyond Breast Cancer wrote a wonderful piece asking Is There a Hierarchy Among Cancer Survivors (read it now, especially the comments, which are the crux of the discussion!). I kept writing about these incidents off and on, and it has now grown to three parts—this is the first part. I’ve been sitting on the post not only because it grew so unwieldy, but also because it is an ugly subject and I have some ugly confessions to make. I want to be completely honest, and as awful as this topic is, avoiding it won’t make it better—not saying conversation about it will either, but, I’m trying anyway.
The more I wrote about it, the more I realized that the comparisons are present even when those doing the comparing don’t think they are doing it, or rather they don’t know or understanding exactly the things they are comparing. For me the worst compare/compete stories are within the breast cancer community. That’s the third part. Slightly less awful are the comparisons/competitions between cancers—as the Pancreatic Cancer Action story shows—and between cancer and other diseases. That’s part two, and it will not be easy to write or read either. But before I started going into all those areas I had to write about a realization I had while considering comparison from as many angles as I could.
I cannot condone the competitive aspect at all. But when it comes to comparison, I do pause. Comparison can be useful, if careful. The most obvious example, at least in my experience, is the fact I tended to seek out other cancer patients with the most similarities—as in those HER2+, since I seemed to be an oddball in an estrogen-based cancer world there for a while. That was the biggest issue for me. Other aspects, like finding others at Stage 3, others who had a lumpectomy, not a single or double mastectomy, others who did not reconstruct, others NOT BRCA positive, and of course, others in my age range—all those things I sought out as well. All those aspects have become less and less important as I’ve progressed away from my diagnosis date. Views and attitudes about positivity and the bullshit around cancer have become waaaaay more important to me. It was just in that first rush of dealing with treatment, of trying to grasp what the hell was going on, that I desired to find people with the most similarities. I still have a habit even now of paying more attention to such silly aspects; it is not that I do not care about, say, Triple Negative cancer, it is more like—cancer is so damn complex, it’s hard to wrap my head around it all sometimes. The bottom line however, is to not let those details cloud the bigger picture, the commonality we share.
That may sound a little hippy-dippy, airy-fairy coming from a Curmudgeon, but it is true!
I will go so far as to say my cancer experience has helped me in my current line of work. As I’ve mentioned here on this blog and other places, I am a pet sitter, but that job turned into caring for a primary client with Chronic Lyme. So I’ve wandered into so home health care tasks in my job. Things like hooking up IVs, administering medicines, keeping a strict schedule (know that old nugget about nurses waking you up in the hospital to give you meds? well, I understand the need to adhere to a schedule no matter what now), paying close attention to dietary restrictions—heck, even cooking—I do all these things now. And yes, they are easier to do BECAUSE I went through the cancer experience. In short, I now appreciate the damn infusion machines that I hated so during chemo. Having to set the drip rate on an IV manually, using my eyes and the metronome app, well, it got tricky for an impatient brat like me. Argh, medicines requiring a slow drip rate are THE WORST!
It wasn’t that I relied on my cancer experience to say, “Oh, I’ve experienced that, no big deal!” That would be awfully dismissive. No, it was more like, “Yeah, that happened to me, it sucked, now how can I apply my gained knowledge here?” Having the frame of reference of major illness and the operations of medical industries has helped: I was surprised and pleased to find the infectious disease center provided materials similar to what I was given at the start of chemo. Was I troubled by just being in a medical facility, by having these upsetting memories? Sure, but at the same time, I was entering into the role of caretaker in another frightening illness situation. Having that frame of reference, experiences to extrapolate from, it was only helpful. Being able to say, “oh yeah this is like that was for me,” made me more efficient, and not too rattled.
It is so NOT about one upmanship.
So is there an undercurrent of one upmanship, or maybe one downmanship (since it’s not about who is better, but who has it worse, right?) in diseases and patients? If so, can it be resolved? No, but I still think it should be discussed.
Has using comparisons ever been helpful for you, to help you understand parts of your illness?