Frame of Reference—The Disease Olympics Part 1

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?

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Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

11 thoughts on “Frame of Reference—The Disease Olympics Part 1”

  1. A very old friend just got her results from exploratory surgery for endometrial cancer and “it” is gone. Her chemo worked? Don’t know but how do I bring her back from the edge of disaster where my mind has placed her?
    Was told once by the doctor in charge of my “case” at the branch clinic where chemo was administered that, “you have used up as much time as three normal patients with your requests.” Someone is counting; doing the math on you.

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  2. I don’t think that making comparisons that lead to observing commonality of experience necessarily leads to disease competitiveness, although that may not be what you meant to imply. Also, it’s natural to seek out others who have a lot in common with one’s own experience. The devil is in the details, as the saying goes, and if you find others who have experienced your kind of details, it can be helpful. It only gets competitive when, as you say, people start insisting that they have it worse than someone else. Which is crap, as well as being pointless. It’s all relative. I have remarked now and then about how hard it is to be single while having cancer. The financial strain of having to rely solely on my income, which is now less because I am not up to working full-time since cancer, is a real thing. I could, if I let myself, feel resentful of all my friends with spouses who have not had to worry about this sort of thing, and claim that I’ve had it worse. But that would be hugely presumptuous. We don’t, in fact, know all the strains and stresses that others go through, so it’s silly to go down the competitive road, isn’t it? We all experience our own pity-parties now and then, but hopefully, we haul ourselves out of that morass and move on.

    I’m glad you are writing about all this, CC. Tough subject, especially when one encounters apparent competition within the breast cancer community. Mets vs. non-mets. Non-invasive vs. invasive. Etcetera and so forth. You’re brave to bring up this shadowy subject, but it’s often implicit, if not acknowledged. And I find it very wearing, not to mention unhelpful. The only way to understand it is to discuss it. xoxo, Kathi

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    1. I agree comparing does not always lead to competition–that’s why I wanted to separate the idea out via this part 1 post. One of the comments on JBBC’s blog post–which is so important–made that distinction too. What I’d found myself thinking over the years, or saying on Twitter, is something like “stop comparing cancers”. I realized then how much I DO compare, which is what THIS post is about. I needed to confront my own comparing habits, to realize a blanket statement or directive to “stop comparing” is NOT good. Where the comparing gets off course is the subject of the next two. I’m sure some perpetrators would agree it is not a competition, but…well you’ll see. Thanks for sticking with me. Out to run errands now and will finish part 2 tonight! xoxox

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  3. Thank you for writing about this subject. I’ve witnessed some unfortunate situations in which patients have had arguments about who had it worse. And it was right around the time I was diagnosed. I agree that comparisons can be useful, if they are done carefully. Comparing our situations is a big part of survivorship after all. We want to connect with those we have the most commonalities with because we want a line of reference. I wanted to know (and still do) how those who were diagnosed at a young age, with similar reports, were doing. So in this case, comparisons have been helpful to me. Now, what I dislike is when there are competitions about who has it worse than whom. I haven’t lived the other person’s struggles and they haven’t lived mine. This is one of the reasons why separations exist in cancerland. Some patients (of all stages) feel dismissed. I certainly felt that way when I encountered the online discussion between an early stager and a stage 4 patient about who had it worse. This is a difficult subject to address because there are so many different angles to consider, but I agree we should talk about it. I’ll be thinking more about it.

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    1. An incident similar to what you describe is what set this all off–and it was a patient whose DX very similar to mine–will explain in the final part of this.
      I don’t think I’ll change any minds with the things I’m going to say, but I’ll say it anyway, you know?

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  4. The Cancer Olympics is like anything in life. We will always find those who have it worse and those who have it better. I guess we want our suffering acknowledged, but I think suffering competitions are a losing game. My mother used to do that and it just wasn’t cool.

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    1. And there are always those that tell us we shouldn’t complain–people have it so much worse. But does that mean I should never be happy or content because so many people have it so much better than me? The whole thing is dumb. Thanks!

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