Become the Best Cactus Grower
January 3, 2016 5:11 PM   Subscribe

Kathleen Hanna, of Bikini Kill, Le Tigre, and The Julie Ruin, discusses feminism and the effects of having an "invisible disease" (Lyme). She's in remission now, but while she was sick, she and her husband, Adam Horovitz, noticed a double-standard for male caregivers. In this interview, she discusses her illness, recovery, and emotional labor.
posted by katie (17 comments total) 25 users marked this as a favorite
 
and [remission's] almost like having a second chance at life

This so much.

I Still don't belive the invisible illness they diagnosed me with (my bet is on fibro or Lyme). And I'd do the research and I'd ask for a cutting edge tests and get shut down because my insurance wouldn't pay for it and my docs would insist it wouldn't tell them anything they could use to help me more than they already would.

But now I'm in "remission" and all my little sick friends in the computer and real life aren't and they're stuck with hoping for new help ... I feel so bad for them while relived their funhouse mirror life isn't mine while I spent years preparing to be trapped in my own body, raising kids and cactus in my dressing gown.

So I'm doing my equivalent of splits and looking over my shoulder in case this nameless whatever strikes me down again. Like I'm in the eye of a storm and I can't see the eyewall and I know it's coming.

So glad to hear her voice speaking out for tests, treatments, and those in or finally out of the storm.
posted by tilde at 5:29 PM on January 3, 2016 [3 favorites]


Onstage, Hanna exposed her breasts and rear-end with lust-killing bluntness

It wasn't lust-killing, but it was blunt and her music still kicks ass.

I've found her recent interviews (and the documentary, which should be mandatory viewing) really interesting, especially her discussions of her illness and feminism. The second link, where she talks about the caretaker issue, matches my experience totally:

Nobody's really commenting on my suffering, they're all commenting on what a great person my husband is.
posted by Dip Flash at 5:38 PM on January 3, 2016 [7 favorites]


Acute lyme disease is of course well established as an illness, and is treatable with antibiotics. Chronic lyme disease is controversial.
posted by idiopath at 5:50 PM on January 3, 2016 [3 favorites]




Well, I'm not a Lyme expert (though I have had the acute version), but Hanna says she had a co-infection of Babesia. A good friend of mine had undiagnosed Lyme with co-infections that caused seizures and serious ongoing liver and kidney problems. Anyway, I dunno...I didn't post it with the idea that her particular ailment was the focus. I was mostly interested in her discussion of her husband as caregiver. I, too have an ailment people don't always believe in: chronic migraine. My husband is, like hers, unbelievably supportive (it helps that he gets migraines, too -- we mutually assist each other -- but mine are more frequent). He also gets heaps of praise from my mother and other women, yet no one seems to comment when I'm helping him. It's just the expectation, and I find that fascinating.
posted by katie at 6:21 PM on January 3, 2016 [7 favorites]


there is no controversy about the fact that some sufferers of acute lyme disease have lingering issues after initial treatment. the controversy is about the cause and treatment when that happens. kathleen hannah talks in depth about tests, and secondary infections, and how involved her doctors have been. unless you have special information about her medical care, questioning her and her doctors seems pretty shitty, especially considering the other things the post focuses on.
posted by nadawi at 6:39 PM on January 3, 2016 [6 favorites]


Kathleen Hanna seems like a badasss woman with an important perspective on what it means to have invisible chronic illness. Her experience speaks to my own experience with my own chronic invisible illness, but it is also important to note that she is communicating bullshit health information in this piece that does ridiculous amounts of damage, particularly to lefty and alternative communities.

While Lyme disease, the infectious disease caused by the Borrelia burgdorferi bacterium, can cause neurological damage that persists after the bacteria is cleared, it is pretty unambiguously not a chronic illness. In the wreckage left by our medical system's absurd inability to adequately handle serious chronic, hard to define, and psychosomatic illness - particularly when patients are women - a whole community of charlatans has sprung up to take the money of people they can fool with their bullshit who have been pretty universally poorly served by the professionals whose job is to care for them.

There are a lot of big clues that make physicians really suspicious of the people promoting Chronic Lyme Syndrome (Here is a review), who seem to have taken Hanna in, as a thing. The scheme generally starts with someone experiencing some set of the many many symptoms that have come to be associated with CLS being directed to "Lyme-literate" physicians who will then perform any number of ridiculous diagnostic tests that are intentionally designed in such a way as to produce false positives for Lyme. The test recommended by the CDC is a clever mix of two immunoassays, one with high specificity but poor sensitivity and one with high sensitivity but poor specificity, that is designed to rule out both false positives and false negatives as much as possible. However these fucknuggets have come up with such an impressive array of sciency sounding shitty PCRs, shitty ELIZAs, and adapted just about every shitty woo diagnostic that its really impossible to debunk them all. They then either prescribe the truly awful IV antibiotics that aren't even often necessary for genuine cases of Lyme and hold patients on them for far longer than the three weeks that is needed, or they just pull some random bullshit treatment out of their asses.
"Kathleen Hanna: I had a relapse of a secondary infection to Lyme disease called Babesia, which is very similar to malaria. It’s in the medication that you take to try to desensitize your body from [Lyme], so you're basically taking medication that's giving you malaria. And I couldn't tour with malaria!"
This does not sound at all like what real treatment for Lyme looks like.

To be clear, the parts of Chronic Lyme Syndrome - which should really be considered as distinct from the Post-Treatment Lyme Disease Syndrome that some people suffer from - that are not horrendously misdiagnosed other disorders are culturally transmitted and we sure as fuck should not let MetaFilter be a vector. If you do get Chronic Lyme Syndrome you will have caught it from the internet or a doctor or a friend's suggestion not a tick, which is not to say that it would be either 'not real' or 'fake' but to say that it something that would not make sense to treat with antibiotics or whatever else the snake-oil salesmen keeping this shit alive are selling these days. There is a general tendency that usually has shitty misogynistic overtones to dismiss psychosomatic illness being somehow silly or not worth respect but it is a deadly serious phenomenon and there are effective treatments available. It fits all of the patterns we’ve seen before over and over again:

-The commonly reported symptoms that last more than six months are ones that have been previously individually demonstrated to have purely psychosomatic origins in past culturally mediated epidemics,
-The commonly reported symptoms are amazingly diverse and follow no other pattern, there are no plausible diagnostic criteria beyond patient reports that separate the affected from the unaffected,
-Otherwise logical physiological interventions like continued antibiotic regimens have been demonstrated to have no meaningful placebo-controlled effect while psychological interventions have been shown to often help,
-CLS is endemic in regions where Lyme disease is not,
-Many of the reported symptoms have no meaningful relationship to symptoms that actual Lyme disease has,
-The majority of those who self-identify as diagnosed with CLS have no substantiated history of having ever contracted Lyme disease,
-And reported symptoms by patients over time have followed patterns where suddenly patients across the country discover similar symptoms at the same time.

From the interview we really have no idea what Kathleen Hanna is suffering from, whether she ever had Lyme to begin with (and may have, its not that uncommon), whether she might have been suffering from anything else, or even really whether some asshole really did actually fucking intentionally infect her Babesia (which is no fucking joke particularly if left untreated), but we do have a responsibility to each other to make sure we only propagate accurate health information.
posted by Blasdelb at 6:55 PM on January 3, 2016 [56 favorites]


"there is no controversy about the fact that some sufferers of acute lyme disease have lingering issues after initial treatment. the controversy is about the cause and treatment when that happens. kathleen hannah talks in depth about tests, and secondary infections, and how involved her doctors have been. unless you have special information about her medical care, questioning her and her doctors seems pretty shitty, especially considering the other things the post focuses on."
The way she describes her disease and particularly her treatment seems to kind of strongly indicate that she has been taken in by bullshit artists. For example, there are no reliable tests for determining whether someone is still suffering from Lyme, instead there are the ELIZA and Western blot tests that both test for an immune reaction to Lyme, which will still be present after infection is cleared. This is OK because there is no indication that an infection with Lyme disease will ever not be cleared after a three week regimen of antibiotics. Similarly, no one in anything remotely resembling a right mind would ever intentionally infect someone with Babesia, this is just well beyond the ordinary quack WTF and into an indication that someone really belongs in a jail cell.

She is clearly an awesome person with an awesome perspective, but her doctors clearly aren't. We have a responsibility to question them and hold their bullshit up to scrutiny.
posted by Blasdelb at 7:20 PM on January 3, 2016 [11 favorites]


This is also clearly a feminist issue from so many perspectives in addition to the important ones Hanna notes in the interview, from the empirically demonstrated way both doctors and people generally dismiss the symptoms that women self-report (previously), to the way in which even when doctors and people generally believe female suffering they don't care nearly so much, to the way that diseases that affect women get less attention and research, to the particularly gendered way psychosomatic disease is moralized and dismissed rather than appropriately pathologized and treated, to the way these shitheads prey largely on women who are made more vulnerable to them by medical misogyny.

There is a deeply moral challenge inherent to stories like Hanna's to believe women who talk about their suffering and to give a shit about it, but there is also a challenge to shut down the snake oil salesmen who make their suffering worse.
posted by Blasdelb at 8:12 PM on January 3, 2016 [24 favorites]


This does not sound at all like what real treatment for Lyme looks like.

Maybe they were going for malariotherapy! You know, that intentional malaria infection that won a Nobel Prize for treating syphilis... because penicillin hadn't been discovered yet.
posted by Panjandrum at 9:42 PM on January 3, 2016 [1 favorite]


I thought you were kidding, but I looked it up and malariotherapy is a real concept. Wow.
posted by blnkfrnk at 10:03 PM on January 3, 2016 [1 favorite]


I know nothing about this chronic Lyme disease, and I'm not especially against the idea that whatever is happening is psychosomatic in principle, but is it really clear that it is? Maybe one or more poorly understood processes are unfolding in complex ways. If this is some sort of octopus of a disease - or two or three diseases - it may take a while for diagnostic criteria to emerge. It wouldn't be the first time some symptom or symptom pattern thought to be psychosomatic turned out to have causes that were more soma than psycho.

I feel like the year after the discovery of heretofore unimagined brain structures + the gut bacteria furore is a weird time to be super confident that illnesses that (I guess) affect mostly women are firmly psychosomatic.

-The commonly reported symptoms that last more than six months are ones that have been previously individually demonstrated to have purely psychosomatic origins in past culturally mediated epidemics,

- Just because particular symptoms were (historically) understood to be psychosomatic in one time and place doesn't mean that's necessarily the case in another.

-Many of the reported symptoms have no meaningful relationship to symptoms that actual Lyme disease has,

Reactive arthritis doesn't look like the effect of a bowel disease, but it is.

-The majority of those who self-identify as diagnosed with CLS have no substantiated history of having ever contracted Lyme disease,

My understanding is that Lyme disease symptoms resemble a cold or flu. People don't always go to the doctor for that, and ticks are small.

-Otherwise logical physiological interventions like continued antibiotic regimens have been demonstrated to have no meaningful placebo-controlled effect while psychological interventions have been shown to often help,

Psychological interventions can improve well-being in any number of conditions; maybe one or more alternative somatic things are going on that aren't responsive to antibiotics - or to those antibiotics

-And reported symptoms by patients over time have followed patterns where suddenly patients across the country discover similar symptoms at the same time.

Maybe, the chronic symptoms relate to one illness, and the sudden ones to another (possibly psychosomatic)

I'm not in a position to say (or even guess) that every reported case is chronic Lyme disease, particularly, or that the current treatment is effective in every (or any) case, but it doesn't seem wholly apparent that every instance is psychosomatic, either.
posted by cotton dress sock at 3:08 AM on January 4, 2016 [2 favorites]


Chronic Lyme is a controversial diagnosis for good reason, but I'd be awfully careful in calling Hanna's illness psychosomatic or "culturally transmitted." A partial list of diseases once considered to be psychological rather than organic in origin:
- ulcerative colitis and Crohn's disease
- rheumatoid arthritis ("rheumatoid arthritic personality")
- peptic ulcer
- heart disease (Type A, anyone?)
- diabetes and asthma (the "psychosomatic family" model hasn't aged well)
- epilepsy ("epileptic personality")
posted by thetortoise at 3:12 AM on January 4, 2016 [8 favorites]


Psychosomatic illness is real physical illness - it isn't taken seriously because everything to do with mental health is stigmatized, doubly so when it affects women.
posted by gingerest at 3:17 AM on January 4, 2016 [7 favorites]


Strictly speaking, it's all physical illness, and it's all also subjective - just a question of influence and emphasis, isn't it? It's just surprising to me that when there is uncertainty about emphasis and influence - especially in an era of one huge discovery after another - "hysteria" is the default explanation, where women apply.
posted by cotton dress sock at 3:52 AM on January 4, 2016 [5 favorites]


somehow i'm not surprised to see toxic woo coming from the woman who unapologetically plays the music festival that ended a 40 year run rather than acknowledge that being a woman is a different thing than being born with a vagina


from the second link, by imogen binnie:

"Who cares, right? Some stupid festival. Except this thing happens where I meet somebody who seems like a cool queer, talk to them for a while, find out eventually that they go to Michfest, and end up realizing: I cannot trust anyone. Nobody has to be accountable to trans women about this shit anywhere, ever. It is this insidious thing that sneaks up on you every time you go to a party or a reading or something: one of these queers to whom I’ve just been introduced goes to Michfest. I mean, I think it is clear how that would make a trans woman feel fucked up, right? “Oh yeah I am good friends with someone who spends hundreds of dollars every summer to support a group that defines ‘woman’ as ‘not you.'"

posted by thug unicorn at 8:09 AM on January 4, 2016 [4 favorites]


how the fuck can Kathleen Hanna get away with never ever talking about goddamn michfest? I kind of wanted to go to see her speak just to ask HEY KATHLEEN I BOUGHT ALL YOUR ALBUMS OFF A KILL ROCK STARS MAIL IN THING BACK IN HIGH SCHOOL AND I HAD THE T-SHIRT AND SO ANYWAY, WHAT THE FUCK ABOUT MICHFEST? HUH EH?

It's extra weird because I was on livejournal back in early 2000s and criticizing the Butchies, Le Tigre, Team Dresch for playing at Michfest was absolutely a thing. Even as a retrograde dipshit internet jerk teenager at the time as myself, it was a thing. And it doesn't come up in these mainstream articles about what are now "established feminist/riot grrl/queer" people....

that said, I don't think conflating Hanna's experience with chronic illness and her playing at transmisogynist bullshit party is a great look. They are two different things, need to be approached differently.
posted by beefetish at 5:10 PM on January 4, 2016 [3 favorites]


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