In which communication is ineffective

[untonuggan]

Note: apologies in advance for the very gender binary language. I am using the terms the medical establishment uses for vaccine criteria which because medical establishment they are shitty, but I am also trying to be inclusive where possible. Just FYI totally skip the part behind the cut text if you need to.

So I like to think of myself as a fairly sympathetic listener. (Doesn't everyone tho?) This is harder in person than in text, because in text I get a sense to read something I was going to say and then erase it because I was about to offer unsolicited advice.

Also in person I sometimes freak out because I am somewhat rusty with humaning and so I just sort of ramble sometimes. Also also, if a nerd-out button gets pressed sometimes I start nerding and then forget we were actually supposed to be talking about the anxiety issue until I have rambled on about this cool thing I found out when I was researching the other day for...awhile. This sometimes also hits my social anxiety button, which means I just. keep. talking.

I am working on this. It is hard.

Recently I was talking about anxiety with a person who shall remain nameless, and the shitty visceral-ness of anxiety. And how anxiety's so toxic that certain medical people recommend not doing regular breast lump self-checks because the freaking out is more toxic than the rate of cancer actually detected. (Or something something like that?)

Anyway, health research is one of my nerd buttons. (My mom is a nurse, I grew up with "I saw the coolest parasite at work today!" as dinner table conversation. Then in college I was a peer sexual health educator and thought about doing public health, which basically means my filter for "these are things we don't talk about in public restaurants" or "check if there are children here before launching into certain topics" is something I have trouble gauging sometimes.)

So for reasons still unknown to me, when I was talking to my friend during their anxiety spiral, I started to PREACH the wonders of Gardasil (the vaccine for HPV, which is a sexually transmitted infection linked to cervical cancer, but it's recommended for young girl-people-with-cervixes-or-IDK-what-you-do-if-you're-intersex-or-on-T-when-you're-older).

Let me pause to preach for a moment. As of this 2013 study, the vaccine is reducing new HPV infection rates among teenage girls by 56%. As of this 2014 study, the states with the lowest rates of vaccination had the highest rates of cervical cancer (and conversely, the highest rates of vaccination had the lowest rates of cervical cancer). In other words, it does lower cancer risk.

Let me speak to you of the downsides of Gardasil, aside from whatever controversy surrounding vaccines and "omg people other than dudebros have sex for pleasure??? the slut shame! also my perfect little princess would never have sex so she does not need it ever" surrounds it:

• it's spendy as fuck out of pocket
• it really does hurt, but definitely less than what it protects against
• it is a three part series, which means you have to remember to go back to get the other parts at specific intervals (though getting part of the series does offer some protection)
• most insurance does not cover it after age 26 (it's stated to be effective when given to women ages 9 to 26)

Let me talk about that last one. The reason for the age thing, according to one gyn I had, is because it works better if you do not have prior HPV exposure. Specifically exposure to the strains it's protecting against. (HPV mutates a lot, but some are more likely to cause cancer.) So basically the CDC/your insurance company/the manufacturer predict that by age 26 people with cervixes have had enough sexual partners that getting Gardasil is not worth the money/time/pain.

But it's not like your 27th birthday hits and BOOM it magically doesn't work because your ancient crone blood turns the vaccine to dust when it enters the same room and then you develop fangs and suck the blood of everyone in the office and they become empty husks and you become young and beautiful. Um, that became a long metaphor. What I'm saying is, it's not the age that actually makes a difference. It's prior exposure. That's why they actually recommending your kid get the vaccine at age 12 or so, because who knows what will happen or what decisions they will make and should they not have protection? I've met someone who was 12 and had a baby, so. It's better to vaccinate everyone young.

So I was talking to my friend and I was like WAIT. You are over the age limit, but you would still be a candidate for the vaccine! And it could protect against cervical cancer [blah blah blah blah].

Which my friend heard as "You are totally at risk and probably going to die of cervical cancer" (because brain weasels).

Fortunately, they mentioned this. Because then I was able to clarify that it was good news, because what I actually meant was that: I know enough about their sexual history, also because I talk about sex and sexual health with people still, because I'm generally cool with that, because peer educator -- they probably would not have been exposed to all the strains of HPV that Gardasil protects against, and therefore they would still be a good candidate for getting the vaccine and having some level of protection and reduced risk of cervical cancer.

(Although because insurance is shitty, it would probably be out of pocket. And also painful and time consuming.)

Note: if you don't qualify for the magical "get protection from Gardasil" category because you've made decisions in the past (or decisions have been made for you) or whatever reason, it is still good things to know. Also no judgment from my part. Because if you are a person who does sexytimes things with people who are eligible for the vaccine (or can pay for the vaccine because they have insurance or whatever reason), your partner(s) getting protected can help you out. ALSO it's good to know in case your knowing can benefit a friend or young person or whomever down the line.

Also they're apparently coming out with a vaccine for people who don't have a cervix sometime, which I still am not sure how that makes a difference in how the vaccine works but I think it's good it's not just one group with the burden of getting vaccinated. (~like with birth control pills but that's another post~) It will also be interesting to see if/how the rhetoric changes about younger people getting the vaccine.

tl;dr If I am talking to you -- online or off -- and I nerd out at you about a thing and it actually increases your anxiety, please tell me to stop. I am probably telling myself to stop in my head but I forgot that I have the option to do that because I hit Awkward Land. I'm working on it.

And usually I am not this bad. I think. Also maybe now you know a thing about the vaccine for HPV that you did not know before! Or maybe you did.

(Also, if you want to nerd out about cool medical research and/or sexual health, lmk. I am probably down for that, even if it includes parasites. Probably especially if it includes parasites.)

Comments

[jjhunter]

I would imagine that if HPV is sexually transmitted, that it's worth vaccinating people who might become carriers for it even if they themselves not people with uteruses / cervixes / etc. At a population level, controlling infectious disease is as much about minimizing population susceptibility to the infection so as to minimize (and maybe even eradicate) spread as it is about protecting individuals most vulnerable to the infection's worst outcomes.

I'd be very interested to know how the vaccine for people without uteruses might be different than for people with uteruses, since to my knowledge the immune system would work much the same in either case - please do let me know if you hear of any details!

[untonuggan]

this is probably something I will try to poke later. <3

[indywind]

FWIW, my information is that the cervix-person-vaccine can be used by non-cervix-persons, it only can't be Officially Recommended for them because that would be an off-label use, since the use it is labeled for is preventing cervical cancer, and warts.

So likely the actual vaccine Officially For Non-Cervix-People will probably be chemically the same and delivered the same, it will just have been tested and proven effective it's effective at preventing HPV-related problems of something-other-than-cervixes.

The vaccines were just coming out in 2006 when I had my HPV diagnosis, and one dude I'd been having (safer with barriers) sex with inquired about getting vaccinated himself, to reduce chances of transmission with his other and future partners. His doctor was game for off-label use if the patient (a) would pay out of pocket and (b)had any risk factor for newly acquiring/transmitting HPV. My sexpartner dude did not end up getting the vaccination because he kinda didn't feel like paying for it and he REALLY REALLY didn't want to admit that he and his wife were nonmonogamous, even in confidentiality to his doctor. (His special brand of willful denial of uncomfortable reality was he largest part of why I ended that relationship soon after.)

[jjhunter]

...I am kind of fascinated by the implication that the labeling for the HPV vaccine doesn't include some variation on 'preventing transmission of HPV to others', since blocking or minimizing likelihood of people becoming vectors of disease transmission is the fundamental point of a vaccine against that disease from a public health POV — benefits for the individual vaccinated are good, but more along the lines of side effects that increase buy-in.

You'd think insurance companies that are always looking to save money & resources in how much they need to provide to keep the populations they serve healthy would be all over low-cost disease spread control - how much does a thousand shots of HPV vaccine cost compared to treatments for one individual with an HPV-attributable cancer? *goes and reads up on HPV-attributable cancer cancer rates* And it's not like cervical cancer is the only HPV-associated cancer, actually; people without cervixes are more likely to get oropharyngeal cancers, and HPV is likely responsible for more than half of the yearly incidence of penile cancers. (CDC — How Many Cancers Are Linked with HPV Each Year? for those who are interested.)

It just seems short-sighted to only regularly vaccinate people with cervixes for HPV when there's cancer risk for anyone infected regardless of whether they have a cervix. And even if HPV was only linked to cervical cancer, it would still be short-sighted to not also include possible carriers in the vaccination effort — we'll never eradicate HPV world-wide if half or more of the population even in the US is never vaccinated for it.

[indywind]

I'm pretty sure insurance companies, much less doctors, the FDA, The Public, the Media, and other Powers in Healthcare, are not solely motivated by cost-effectively providing useful treatment.

There are plenty of social, moral, and ideological factors influencing decisions too, even leaving aside competing priorities among agreed-upon treatments.

I included the story about my sex ex to illustrate how people make shitty decisions often not driven by reason or long-sightedness let alone consideration for others (even others they're intimately involved with, much less numerous strangers). Healthcare decisionmakers are also people, and also capable of making shitty decisions in the same way at a larger scale.

[untonuggan]

yes people do not make logical decisions no matter how much we tell ourselves that we do.

thank you for sharing your story.

also wrt all the government/health industry people and THEIR decision making, a big thing in public health is actually how certain policies can create a system where you incentivize the "wrong" behavior

like there are laws in some places that are supposed to limit sex work and so they allow cops to arrest people on suspicion of sex work based on them carrying a large number of condoms...

...which just means that sex workers are having sex without condoms, because the decision is deal with cops/jail or maybe get a disease (or pregnancy)...

...which means that even though there are all these public health programs promoting condom use, sex workers aren't using condoms, because the legal system is actively disincentivizing it

[indywind]

Ugh, yes, it's amazing how much we work against our own interests.

[untonuggan]

when I was looking for better pain management, there was a medication I took for awhile before Side Effects that was *amazing*. it cost the insurance $800/month, but it was non-addictive. my dr had to fill out 19 pages of paperwork every 3 months so I could take it.

however, I could have gotten a prescription for an opiod pain reliever without any paperwork from the insurance and it would have cost them idk $20/month MAX (probably more like $10). there is a risk that I would become addicted, of course, which is actually pretty likely in my case because family history.

ETA: also just disclaimer here, if you *do* use an opiod painkiller and it works for you, that's great! they just make me depressed every time I use them and I've had aunts/uncles on both sides die from addiction so I try to use them only after surgery or something.

but if I did, they could just blame me, right? and most insurance just covers limitless detox and only one rehab center stay per 2 years or something, so ultimately the risk of me getting hooked on opiods is *probably* cheaper for them than definitely giving me an $800/month medication. (getting dark here: possibly if it shortened my life, i would also spend less time on their plan using it for my very expensive chronic conditions.)

this is while there is an ongoing public discussion about opiod addiction. i mean, some of the latter is pure speculation on my part. but. I feel like for the CDC there is more chance of "actually cares about herd immunity." for the drug company I think it is "cares about making vaccine profitable."

[untonuggan]

I am glad you are not with the Willfull Denial Dude anymore.

thank you for sharing your experience.

[altamira16]

I thought I read something recently about how the first people to receive this vaccine are now in their early 20s, and they now have about one fourth the HPV rate as their unvaccinated peers.

But people who have HPV do not necessarily get cancer because there are many types of intervention before the "you have cancer" stage is hit. But even one case of cervical cancer can be so expensive to treat that it may make sense for insurance to start covering this shit because giving how many people $450 worth of shots is cheaper than the thousands and thousands it costs to treat a cancer.

[untonuggan]

well, at least in my case, they will totally cover it -- if you are not yet 27. then your magical crone blood blah blah blah or you know see above. but yeah, i think it's also trying to figure out a system where doctors/insurance companies don't go "oh yeah, you've slept with too many people, we can't give you this vaccine" and get their butts sued off them.

[altamira16]

Well, sexually active people are typically going to be exposed by 27. Some may be exposed sooner, some later. I wonder what their typically sexual active person is like. Is it a person with one partner a year? A person with more? It's not a nun. Probably not a lesbian. I think it is funny that you are very supportive of this vaccine even though you generally hate gynecologists. Or maybe your hatred of gynecologists is why you are for this particular vaccine. You are trying to design a life that involves minimal interactions with a gynecologist. And HPV and cervical cancer probably involve way too many gynecological visits.

[untonuggan]

Ok aside from standard reasons to dislike the gyn, and my recent "omg please will you take this pain seriously it's very monthly and I can't breathe":

Every time I go I have a conversation about pregnancy that usually goes:
But you are sexually active and not on birth control, so how do you know you are not pregnant?
And I am very very sick of trying to find an answer that will let us move on. Because I hate it when people have this moment like they never even considered why two women might not use birth control and their eyes go "ooooh", and then they try to act not weird again.

Like can I not just check a box on the form? Because also a lot of gyn intake forms are super heterosexist, and that is a cheap way to actually talk about gyn issues.

Um so yes basically I think the field is incredibly important but needs improvement.

[altamira16]

That makes so much sense!

[sine_nomine]

The answer to "You are sexually active; how do you know that you are not pregnant?" is "I am sexually active with women, not men and -- the last time I checked -- women couldn't cause pregnancy... now, if you believe the Immaculate Conception can happen twice..."

[untonuggan]

yeah

i think the issue is not so much not having pithy answers (I've got a bucketload) as that momentary awkwardness of coming out in an intimate setting where you'd *think* the idea that people might not be having sex-that-can-make-babies would not be so REVOLUTIONARY

like I could be in a relationship where a penis is involved and sexually active and maybe my partner just likes to be pegged, right? or maybe we just do oral? (though in that situation for my own sake I would probably have some form of backup plan around for experimentation night or something)

ETA:
sexual activities that will get you pregnant: 1 (one)
sexual activities that will not result in pregnancy: I don't think there's even a definitive list

but the dr's office acts like it's so shocking that someone might be in category the second and not category the first which WHAT EVEN that is my rage moment really

[sine_nomine]

Understood... I had a friend many many years ago at the office of a new gynecologist. The doctor said, "Are you sexually active?" and she said "Yes." So he said, "What are you doing in terms of birth control?" and she said, "We haven't really thought any of that would be necessary..." The doctor said, "Well, you know, you should really consider it... you might have a situation with an unwanted pregnancy..." so she replied, "Really? Can we get my partner in here, too? She'd love to learn about this!"

For me, I treat it as utterly matter-of-fact and I find that it doesn't cause any issues (I even came out to my doctor about the BDSM thing - which led to some interesting interactions!); ymmv, of course!

[the_rck]

I have friends who got their sons this vaccination years ago. I don't think it was a different vaccine than the one Cordelia had. The current recommendation in Michigan is to vaccinate both boys and girls. According to the state's public health website, the vaccine protects against other cancers than just cervical.

There seem to be three different vaccines, one that protects against two strains, one that protects against four (Gardasil), and a new one that protects against nine.

I kept asking about this one, starting when Cordelia was about nine, because I was worried that, if I didn't ask, the pediatrician wouldn't tell us when we needed it. I have no reason to think they wouldn't, but I worried because I worry about things like that.

[untonuggan]

A+ parenting

[syntaxofthings]

I am pleased by the crone blood metaphor :D If I hadn't already had it, I would count as one of those people over 26 who has not had enough exposure, so it would still be effective, and wouldn't that be a pain. Fortunately when it was just coming out, my Nurse Mom was like "you are getting this vaccine and not cervical cancer". Good parenting \o/

[liv]

Awesome stuff, thank you for passing on the info.

I don't think anybody's claiming the vaccine works by a different mechanism in different sexes. It's more a cost-effectiveness thing: people with external genitalia who are infected with HPV have a much lower risk of getting penile or anal cancer than people with cervixes who are infected with HPV have of getting cervical cancer. Thus, it doesn't save as much money to vaccinate penis-havers in order to prevent them from getting infected with the virus in the first place.

There was also some not entirely straightforward sexism going on with the early testing of the vaccines. The upshot was that all the preliminary trials were done on (people the researchers believed to be) girls. So for some time there wasn't any data on safety or effectiveness in boys, trans girls, intersex people etc. Now that the vaccine is a commercial success, the research is catching up so it's licensed, but not widely available, for people with different genital configurations.

[untonuggan]

i do remember some mutterings about the vaccine being rushed out the door, so maybe that is part of what was meant? idk. i can see the benefits of "let's start vaccinating this generation" obviously, but it's also like "omg seriously herd immunity also throat cancer also omg"

[cxcvi]

Anyway, health research is one of my nerd buttons.

That means that it was probably you who found a thing about swearing being effective at mitigating chronic pain? I seem to remember this being a reading list thing, but I don't remember who from.

[untonuggan]

I think that was someone else, but I don't remember who either?

[shehasathree]

I am, well, *me* (and you've read enough of my dw to know that i am much more on the nerdy infodumpy "this thing happening in/to my body is horrifying and terrible but also fascinating, let me tell you about it!" side of things). One of my closest in-real-life friends can't even deal with, like, mentions of bones in their specificities without getting seriously squeamish.

We deal:
I try and remember not to detail in conversations with her, and when i fuck up she promptly reminds me, and then i go "oh shit, i'm sorry!" and wince, and we change the topic of conversation (either permanently, or until we've both calmed down and i've figured out how to tell her about Thing without the squeamish details).

And she doesn't freak out over having to tell me not to talk about stuff and i don't beat myself up or performatively enact a specific version of the covert narcissistic classic, I Am the Worst Person Ever For Making That Mistake which has Hurt You, Let's Continue to Talk about Me and My Feeeelings.

(Which is not to judge anyone if due to different configurations of any of the variables they're *not* able to do that, but...it gives me hope, that we are able to make it work. *g*)

I have a family friend who i'm not as close to anymore, who sincerely believes that her (clearly real and fairly devastating) health problems were directly caused by the Gardasil vaccine, *and* that that is because the vaccine is "dangerous" and untested, and that vaccines in general are dangerous, and that it's important to warn other unsuspecting people not to have them. :/

It's extra-complicated because I *do* actually believe that there were and are problems with how the vaccine was 'marketed' to health workers and to the general public (although i suspect my objects are not their objections), i *do* think that in general we have issues with not having good or comprehensive enough registers of adverse events for all kinds of medications (although i suspect we have different ideas of how and why this is, and of how frequent significant adverse events are, and what counts as evidence), and ... because my friend's grandmother was a DES mother (and her mother a DES daughter) who both had real and demonstrable harm done to them by paternalistic and misogynistic elements health system, which did actually involve actual cover-ups and conspiracy theory type stuff. /o\

(Actually, we might not be as close anymore in part *because* she and her (health activist) mother have picked up on the fact that i Do Not Agree with their views, even though i have been super-reserved and timid about it (usually on facebook, but this tends to be how i am in real life as well, unless it's in e.g. a classroom space and i am very confident that i know what i'm talking about).

And, uh, possibly because they've also picked up on the fact that i don't believe that autism is a teerrible tragedy caused by toxins and vaccines, ehehe.)

[jesse_the_k]

Chiming in to say how much I adore

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I don't beat myself up or performatively enact a specific version of the covert narcissistic classic, I Am the Worst Person Ever For Making That Mistake which has Hurt You, Let's Continue to Talk about Me and My Feeeelings.

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because it names a behavior I have frequently encountered, but was only mystified by.

...and also direct experience of conspiratorial harms (I'm also a DES daughter*) can propel people in many directions. people are different, uh, who knew.

[untonuggan]

OMG YES to this part.

though for my part, I have a distinct memory of sometime in middle school consciously learning how other people (not in my family) apologized because I realized that (a) apologies made the way my family made them did not make me feel better; (b) they did not seem to resolve any conflict with friends outside my family or be socially acceptable; (c) I'd burned a couple friendships and was mystified about whyyyyy; (d) I had this One Friend who just...said what she did that was wrong, and that she was sorry, and meant it, and things magically improved and I also felt *better* when it happened. so I started trying to do that more, and lo! it was magic.

but yeah probably the torching of those friendships was in the long run a good way to learn that lesson, but oh boy did it suck at the time.

(I thought that conflict avoidance, making everything about my feeeeeeeeeeelings, and writing *and mailing* a letter while I was still angry about What The Other Person Did Wrong were good ways to handle a situation about some dispute about the art room cleanup or maybe being jealous of a friendship or idek whatever middle school girls argue about. it was HORRIBLE and I still cringe in retrospect and that person was absolutely right to cut me off, but omg.)

[untonuggan]

(signed, modeling my behaviors on a narcissistic parent)

(what could possibly go wrong)

[jesse_the_k]

(nothing! and also why my generation is the last of the line for our families.)

[shehasathree]

Thank-you for this comment, it made my day (and gives me little sparks of joy whenever my eyes pass over it in my inbox/comment notifications).

Omfg, *so interesting*. People! Diversity! Endlessly fascinating.)

[dragonyphoenix]

the shitty visceral-ness of anxiety. Thanks for this. I don't know if Leslie has this kind of anxiety or not but she definitely does have anxiety. Yesterday morning she was not waiting outdoors when Metro Access arrived and she freaked. She was rushing out the door so fast - she's on crutches - that I thought she was going to fall. I tried to tell her the van was slowing down and stopping but she wasn't hearing me at all. So your description is helping me understand what that might be like for her. Thanks.

[untonuggan]

you're welcome! you can actually thank maramcreates for the poeticness, I copied some from our discussion

[jesse_the_k]

What a useful post! Thank you.

Also I'd like to engrave

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ancient crone blood

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on the walls of my phlebotomist, so maybe she'd work a little more carefully.

[untonuggan]

ahahahhahha

yes this

[untonuggan]

check out my journal's new tagline :P

[jesse_the_k]

Outstanding.

Also icon is true (no, actually about your wonderful words on performative apology)