[Contents: medical, tmi, weight, mention of previous miscarriage]
WHY AM I STILL PREGNANT
Okay before I go any further, let me make a few things clear: one, I am so not looking for advice, so please miss me with that. Two, I really, really do not want anyone saying to me "oh but first babies are almost always late", "most pregnancies go past their due date", "only x% of babies arrive on their due date", or any variation thereof.
Partly because I know all of the statistics already, thanks, and partly because THIS WAS IN NO WAY WHAT I WAS LED TO BELIEVE WHAT WOULD HAPPEN.
"Oh well ha ha no one can predi-" SHUT. THE. ENTIRE. FUCK. UP.
If you've been reading for a while, you know that I have (had? maybe at this point "had" is more appropriate) a number of risk factors for pre-term birth, including thyroid disease, a history of spontaneous miscarriage, vaginal bleeding during pregnancy, a short cervix (including having an emergency cerclage put in), low pregnancy weight gain, and anti-thyroid antibodies. Basically, every single care provider I have seen at this point is extremely shocked that I made it to 38 weeks, NEVER EVEN MIND THAT I AM PAST 40 WEEKS NOW.
For anyone who would like to spout some "oh but your dates are probably off tee hee" shit, no, they're not. I know the exact date I fucking ovulated, which was confirmed by a very early ultrasound, so fuck off. While I do think that the method most often used to date a pregnancy, Naegele's Rule, does play a role in the fact that more pregnancies go past 40 weeks than not, that was not the method used to date my pregnancy.
Even more fun: for pregnant folks with ultrasound-indicated cerclages (LIKE MINE), on average they deliver about 2 weeks after cerclage removal. (This is a PDF of one of the studies looking at this sort of thing. I have not been able to find a non-PDF source yet, but if I do, I'll add it.) So mean delivery time is just under 14 days after cerclage removal, plus or minus 10 days. Tomorrow will be that "plus 10 days" point for me. I had my cerclage out over three weeks ago.
There is still no sign that I will be delivering this kid any time soon. Oh sure, I've been having contractions off and on since two days after the cerclage removal. Bloody show? Check; that was three weeks ago too. On multiple occasions, I have had contractions 10 minutes apart for an hour, even 5 minutes apart for an hour. I've had contractions that have made me stop what I was doing, or made me lean against the wall, take deep breaths, actually say "fuck, ow". Before anyone tries to lecture me "Oh well Braxton-Hicks can be painful", if they were Braxton-Hicks, I'd kind of expect them to stop when I laid down and drank a couple glasses of water, which is NOT WHAT HAPPENS, so you can also shut the entire fuck up. I was 2 cm dilated THREE POINT FIVE WEEKS AGO, and 50% effaced. The Kid was at -2 engagement (translation: head dropped in to my pelvis, but not quite all the way.) As of Wednesday, THAT HAS NOT CHANGED.
Sunday, we thought maybe something was happening. From Sunday in to Monday, I had contractions about half an hour apart for OVER 24 HOURS. Monday afternoon, they stopped for a bit, then came back 10 minutes apart. We thought for sure that would be it, especially since we live in Boston, Monday was the Boston Marathon, and getting anywhere on Marathon Monday is THE biggest pain in the ass. Then the contractions stopped.
Tuesday I didn't have much, except that all of a sudden, huh, wow, some sort of watery vaginal discharge where there wasn't before! Could this be amniotic fluid? MAYBE. So I watch and wait and yeah, five hours later, still slowly leaking a bit, so I call my doctor's office. I wouldn't have cared, except that I am Group B Strep positive, which, long story short, means if my water breaks, I need to proceed directly to the hospital to get IV antibiotics, do not pass Go, do not collect $200. (Regardless of when my water breaks - which, it's more likely to break in active labor than beforehand, but wev - I need to receive antibiotics every four hours during active labor, and ideally I'd have at least 2 doses before The Kid arrives.) So I call. And I'm like, I'm not sure, but it's enough of a change and I know that if it is amniotic fluid, we need to take steps, and the OB on call agreed, so about 11:45 Tuesday night we headed to the hospital.
No, I did not post anything on Twitter about it, no we did not call our parents, because fuck if I'm getting everyone excited for something just as likely to be a false alarm.
Which it was.
We get to the hospital, they hook me up to the monitors, The Kid kicks the monitors, they test to see if it's amniotic fluid, it's not, thankfully neither the nurse nor the midwife gave me much of that condescending "oh it's your first pregnancy you clearly don't know what's going on" shit or else someone would have died, we got sent home.
Yesterday, I'm in the shower, and holy shit, here I am leaning against the wall because OW. Every seven minutes, OW. I start thinking about calling The Man and saying hey, maybe you should think about leaving work. I ponder this for about ten minutes, during which point the contractions stop. I get up, walk around, fold some laundry, eat some beans and rice, hahahahah NOPE we're done for the day.
I consider shanking some motherfuckers. Which, honestly, my interests right now are first and foremost, HAVING A DAMN KID ALREADY JEEBUS, sleeping, eating (mostly beans and rice, because oh my fucking god beans and rice is so delicious), and SHANKING MOTHERFUCKERS.
Meanwhile my pelvis is still a floppy, relaxin-fucked mess, I have weird stretch marks all over my belly, my belly dropped OH RIGHT LIKE THREE WEEKS AGO ALREADY, I have not been able to find new bras (which I made the mistake of tweeting about... I'm totally shocked the random person on Twitter who insisted no no, they totally make stretchy multiple-cup sized bras in your size hasn't gotten back to me yet... BECAUSE NO ONE MAKES THOSE IN MY SIZE IT'S LIKE I KNOW WHAT I'M TALKING ABOUT OR SOMETHING), thank fuck I still have pants and shirts that fit, I'm getting sick of packing my meds and glasses and chargers and shit every time I leave the house, and if one more person asks me "still pregnant?" or any variation thereof, I will be announcing The Kid's arrival AT LEAST A MONTH AFTERWARDS YOU CAN ALL JUST GO SCREW.
Showing posts with label research. Show all posts
Showing posts with label research. Show all posts
Friday, April 25, 2014
Tuesday, February 4, 2014
"Have You Thought About How You're Going to Feed the Baby?"
[Contents: medical, gender essentialism, fat hate]
That was one of the questions I got asked yesterday in my prenatal appointment with the midwife.
She's not new to the practice, but I hadn't seen her before, and we actually had a good discussion on the framing of that question. She talked about how she had used to say "So are you planning on breastfeeding?" and after some feedback and looking in to things, realized that could be incredibly stigmatizing towards people who could not or chose not to breastfeed. So, good for her. Especially since so much of the pro-breastfeeding rhetoric that's out there is stigmatizing, shaming, and guilt-tripping bullshit.
I tweeted about this the other day, but I ran across an article entitled "Is breastfeeding the key to mother-baby bonding?" And the answer is NOPE NEXT QUESTION, again, as I tweeted. But if that article is intended to get more people to breastfeed their babies, that's not going to do it. Because what that title is really saying is "fyi, if you don't breastfeed your baby, you're a BAD MOM and you WON'T BOND with your kid." Which is false false falsity false... but when you hear that message often enough, it starts sinking in.
I also mentioned, both to the midwife and to Twitter, that I planned on breastfeeding, in spite of a lot of the pro-breastfeeding stuff that was out there. And that's really the case for me. Honestly, The Man being pro-breastfeeding did way more to convince me to try it than anything I've ever read or heard on the subject. I was formula-fed, as were my siblings, and really, I don't have a problem with formula feeding. (I have problems with formula manufacturers, but not formula in and of itself.)
The thing of it is, I don't know that breastfeeding is going to work, for a couple of reasons.
One, supposedly breastfeeding requires you to consume an extra 500 calories a day, above and beyond what you ate during pregnancy. Okay, I haven't read any good studies on it, but on its face, that passes the sniff test, if you will. It makes sense that you're going to need some extra fuel in order to produce food for an entire other being. You're also supposed to drink plenty of water - again, makes sense. But here's my problem: I apparently can't eat enough to even gain weight during pregnancy. I lost three pounds this past month, as I transitioned in to my third trimester, where "typical" weight gain is a pound a week. Instead I lost almost a pound a week. Let's not even get in to my fucked up issues with food from my past - I really have been pretty damn good about fooding myself on the regular once I got over the constant fucking nausea. But even with that, it seems I cannot eat enough.
I also know that I don't often drink enough water. When I get really dehydrated, I start getting Braxton-Hicks contractions. That's considered typical (although apparently I started getting those much earlier than most people, WHOOPS sorry care providers; I've always been precocious), but jeezy muffin creezy I'm supposed to drink EVEN MORE WATER? Oh fuck.
I just don't know that I'll be able to keep up with eating and drinking enough to actually do this.
Secondly, that's all complicated by the fact that I am hypothyroid, and most likely have Hashimoto's disease. I haven't been officially diagnosed with Hashi's... but I meet every criteria, including the presence of TPO antibodies above and beyond what's considered "normal" in a woman my age. It's also the most common cause of hypothyroidism, so HAHA WELP. There isn't a ton of research in to hypothyroidism of any stripe and breastfeeding, but what's out there suggests that breastfeeding is more difficult with hypothyroidism. The TPO antibodies, so far as we know, are not secreted in breastmilk (which is good), but people with hypothyroidism are more likely to have significant supply issues.
Plus, we just started regulating my thyroid, and fixing all of the problems that come along with a borked thyroid (which, in case you forgot, include severe iron deficiency, severe vitamin D deficiency, a totally wack metabolism, B12 deficiency, and more) less than a year ago. I'm quite honestly a bit shocked a, that I even got pregnant, and b, that I've been able to stay pregnant while some of this shit is still regulating. (And yes, it still is - I can tell from symptoms, but even without that, it was probably fucked for twenty years. It ain't gonna fix itself in nine months.) Even by the time The Kid is born, it will STILL be less than a year that I'll have been in treatment. And while my iron and D counts are still slowly creeping up, they have slowed down their upward movement in pregnancy. In other words, things are improving, but not as quickly, because pregnancy is an additional stress and draw on those resources.
This is why when I got an email from yesterday's midwife about "oh yeah, your blood work was normal, your iron looks good for this point in pregnancy", I laughed. Lady, my hematocrit and hemoglobin slid down again and are both below normal, and my MCV is still below normal. I'm still fighting for iron and having trouble hanging on to it. "I recommend you continue taking your current vitamins and supplements" also made me laugh. THERE WAS NO CHANCE I WAS STOPPING ANY TIME SOON, THANKS. Especially since that's all being managed by my pcp - who is tracking my ferritin, that is, stored iron, not just the circulating iron. It's the ferritin that was dangerously low and that we're working on bringing up. As of December, it was at 51. After supplementing since July. It should be around 80. Yeah. Got a ways to go on that one.
Which also raises the question, how nutritious is any breastmilk I manage to make going to be? And, if it's like pregnancy, wherein the fetus and placenta basically override my needs for nutrients and steal shit like calcium right out of my damn TEETH if they need it... what cost will I have to pay? How healthy is that going to be for me?
Plus, people with Hashi's are more likely to have significant thyroid problems in the post-partum period. In other words, it's very likely that shit's going to get wild with my thyroid. So with that, on top of "hey things aren't actually totally regulated yet WHEE", and then trying to breastfeed? Oh yeah shit could get real interesting, real quick.
Finally... if you look at the pictures in all of the breastfeeding literature? Fat people don't breastfeed. People with very large breasts like mine don't breastfeed. People like me don't use breastfeeding aids like Boppy or My Brest Friend (NOT KIDDING, THAT'S THE NAME) pillows, because they aren't big enough. If I want to use a pillow to help support The Kid, I either have to make one, or make due with other pillows, because there just aren't purpose-made pillows manufactured to fit someone like me. There aren't a lot of options for nursing bras even in my current size, much less if my breasts get even bigger (which they probably will), or clothing made to make nursing easier. All of those nursing covers? AHAHAHAHAHAHAHHAHAHAHAH nope too small.
I have no idea if any of the lactation consultants will even know how to work with someone shaped like me. You would think they would... and yet doctors and other care providers often don't, so I don't assume they will. Which could mean that for the most part, I'm going to be on my own, without a lot of professional support. Which is also not a guaranteed recipe for disaster - the lactation consultant is, after all, a recent invention - but it's not like breastfeeding was something my family has done recently either, you know? My mom is definitely pro whatever my plans are, but she doesn't have practical experience with them. Even most of the people I know who are pro-breastfeeding, give breastfeeding advice, etc. are not fat folk.
So yeah I'm planning on breastfeeding, and if you want to be all like "WELL YOU ARE GETTING DISCOURAGED BEFORE YOU START YOU ARE BAD", go fuck yourself. I'm also signing up for formula coupons just in case. And preparing for the onslaught of BREAST IS BEST and OH BUT YOU SHOULDN'T SUPPLEMENT and all of the other bullshit, including, I'm sure, guilt from some folks if I switch to formula. Fuck it. Kid's getting fed no matter what. But shit, can we drop most of how we talk about breastfeeding and how we "encourage" people to do it? Because it's really not encouraging at all.
That was one of the questions I got asked yesterday in my prenatal appointment with the midwife.
She's not new to the practice, but I hadn't seen her before, and we actually had a good discussion on the framing of that question. She talked about how she had used to say "So are you planning on breastfeeding?" and after some feedback and looking in to things, realized that could be incredibly stigmatizing towards people who could not or chose not to breastfeed. So, good for her. Especially since so much of the pro-breastfeeding rhetoric that's out there is stigmatizing, shaming, and guilt-tripping bullshit.
I tweeted about this the other day, but I ran across an article entitled "Is breastfeeding the key to mother-baby bonding?" And the answer is NOPE NEXT QUESTION, again, as I tweeted. But if that article is intended to get more people to breastfeed their babies, that's not going to do it. Because what that title is really saying is "fyi, if you don't breastfeed your baby, you're a BAD MOM and you WON'T BOND with your kid." Which is false false falsity false... but when you hear that message often enough, it starts sinking in.
I also mentioned, both to the midwife and to Twitter, that I planned on breastfeeding, in spite of a lot of the pro-breastfeeding stuff that was out there. And that's really the case for me. Honestly, The Man being pro-breastfeeding did way more to convince me to try it than anything I've ever read or heard on the subject. I was formula-fed, as were my siblings, and really, I don't have a problem with formula feeding. (I have problems with formula manufacturers, but not formula in and of itself.)
The thing of it is, I don't know that breastfeeding is going to work, for a couple of reasons.
One, supposedly breastfeeding requires you to consume an extra 500 calories a day, above and beyond what you ate during pregnancy. Okay, I haven't read any good studies on it, but on its face, that passes the sniff test, if you will. It makes sense that you're going to need some extra fuel in order to produce food for an entire other being. You're also supposed to drink plenty of water - again, makes sense. But here's my problem: I apparently can't eat enough to even gain weight during pregnancy. I lost three pounds this past month, as I transitioned in to my third trimester, where "typical" weight gain is a pound a week. Instead I lost almost a pound a week. Let's not even get in to my fucked up issues with food from my past - I really have been pretty damn good about fooding myself on the regular once I got over the constant fucking nausea. But even with that, it seems I cannot eat enough.
I also know that I don't often drink enough water. When I get really dehydrated, I start getting Braxton-Hicks contractions. That's considered typical (although apparently I started getting those much earlier than most people, WHOOPS sorry care providers; I've always been precocious), but jeezy muffin creezy I'm supposed to drink EVEN MORE WATER? Oh fuck.
I just don't know that I'll be able to keep up with eating and drinking enough to actually do this.
Secondly, that's all complicated by the fact that I am hypothyroid, and most likely have Hashimoto's disease. I haven't been officially diagnosed with Hashi's... but I meet every criteria, including the presence of TPO antibodies above and beyond what's considered "normal" in a woman my age. It's also the most common cause of hypothyroidism, so HAHA WELP. There isn't a ton of research in to hypothyroidism of any stripe and breastfeeding, but what's out there suggests that breastfeeding is more difficult with hypothyroidism. The TPO antibodies, so far as we know, are not secreted in breastmilk (which is good), but people with hypothyroidism are more likely to have significant supply issues.
Plus, we just started regulating my thyroid, and fixing all of the problems that come along with a borked thyroid (which, in case you forgot, include severe iron deficiency, severe vitamin D deficiency, a totally wack metabolism, B12 deficiency, and more) less than a year ago. I'm quite honestly a bit shocked a, that I even got pregnant, and b, that I've been able to stay pregnant while some of this shit is still regulating. (And yes, it still is - I can tell from symptoms, but even without that, it was probably fucked for twenty years. It ain't gonna fix itself in nine months.) Even by the time The Kid is born, it will STILL be less than a year that I'll have been in treatment. And while my iron and D counts are still slowly creeping up, they have slowed down their upward movement in pregnancy. In other words, things are improving, but not as quickly, because pregnancy is an additional stress and draw on those resources.
This is why when I got an email from yesterday's midwife about "oh yeah, your blood work was normal, your iron looks good for this point in pregnancy", I laughed. Lady, my hematocrit and hemoglobin slid down again and are both below normal, and my MCV is still below normal. I'm still fighting for iron and having trouble hanging on to it. "I recommend you continue taking your current vitamins and supplements" also made me laugh. THERE WAS NO CHANCE I WAS STOPPING ANY TIME SOON, THANKS. Especially since that's all being managed by my pcp - who is tracking my ferritin, that is, stored iron, not just the circulating iron. It's the ferritin that was dangerously low and that we're working on bringing up. As of December, it was at 51. After supplementing since July. It should be around 80. Yeah. Got a ways to go on that one.
Which also raises the question, how nutritious is any breastmilk I manage to make going to be? And, if it's like pregnancy, wherein the fetus and placenta basically override my needs for nutrients and steal shit like calcium right out of my damn TEETH if they need it... what cost will I have to pay? How healthy is that going to be for me?
Plus, people with Hashi's are more likely to have significant thyroid problems in the post-partum period. In other words, it's very likely that shit's going to get wild with my thyroid. So with that, on top of "hey things aren't actually totally regulated yet WHEE", and then trying to breastfeed? Oh yeah shit could get real interesting, real quick.
Finally... if you look at the pictures in all of the breastfeeding literature? Fat people don't breastfeed. People with very large breasts like mine don't breastfeed. People like me don't use breastfeeding aids like Boppy or My Brest Friend (NOT KIDDING, THAT'S THE NAME) pillows, because they aren't big enough. If I want to use a pillow to help support The Kid, I either have to make one, or make due with other pillows, because there just aren't purpose-made pillows manufactured to fit someone like me. There aren't a lot of options for nursing bras even in my current size, much less if my breasts get even bigger (which they probably will), or clothing made to make nursing easier. All of those nursing covers? AHAHAHAHAHAHAHHAHAHAHAH nope too small.
I have no idea if any of the lactation consultants will even know how to work with someone shaped like me. You would think they would... and yet doctors and other care providers often don't, so I don't assume they will. Which could mean that for the most part, I'm going to be on my own, without a lot of professional support. Which is also not a guaranteed recipe for disaster - the lactation consultant is, after all, a recent invention - but it's not like breastfeeding was something my family has done recently either, you know? My mom is definitely pro whatever my plans are, but she doesn't have practical experience with them. Even most of the people I know who are pro-breastfeeding, give breastfeeding advice, etc. are not fat folk.
So yeah I'm planning on breastfeeding, and if you want to be all like "WELL YOU ARE GETTING DISCOURAGED BEFORE YOU START YOU ARE BAD", go fuck yourself. I'm also signing up for formula coupons just in case. And preparing for the onslaught of BREAST IS BEST and OH BUT YOU SHOULDN'T SUPPLEMENT and all of the other bullshit, including, I'm sure, guilt from some folks if I switch to formula. Fuck it. Kid's getting fed no matter what. But shit, can we drop most of how we talk about breastfeeding and how we "encourage" people to do it? Because it's really not encouraging at all.
Monday, January 20, 2014
What Is No Longer Complicating My Pregnancy
[Contents: TMI, medical, including descriptions of surgery and needles]
So as I mentioned on Twitter and here on Wednesday, I wound up having a cervical cerclage put in, kind of on a surprise basis, just before Christmas. This post is about that day and what happened. It's going to be super long.
So as I mentioned on Twitter and here on Wednesday, I wound up having a cervical cerclage put in, kind of on a surprise basis, just before Christmas. This post is about that day and what happened. It's going to be super long.
Friday, January 17, 2014
Full Genetic Sequencing for Fetuses and Motherfucking Ethics
[Contents: ableism, eliminationist rhetoric, fat hate]
I briefly mentioned this article on Twitter yesterday: What Fetal Genome Screening Could Mean For Babies And Parents. That's a donotlink link, by the way. The article was published in Scientific American.
I'm not even sure I can adequately express how deeply I'm disturbed and frankly disgusted by the attitudes expressed by the scientists in the article. The first few commenters are even worse.
Basically, some bioethicists at Brigham & Women's Hospital in Boston, MA have published in The New England Journal of Medicine that YUP, parents should be able to get this with appropriate genetic counseling services.
That in and of itself isn't necessarily so bad, although "genetic counseling" leaves open a big door and there's lots of variation as to what it includes and entails. Then you get in to their reasons for arguing this. The big one cited is "Parents may emphasize diet and exercise more for a child at heightened risk of diabetes, for instance."
BECAUSE YES, SINGLING OUT A KID FOR DIFFERENT TREATMENT FROM DAY ONE FOR A DISEASE THEY DON'T HAVE BUT MIGHT GET IS SUCH A GREAT FUCKING IDEA, FOLKS.
I just... look. If you are different as a kid already, that's hard enough. Kids who have illnesses that require treatment, like special diet plans, medication, or other treatments visible in public, are incredibly stigmatized on a routine basis. And while the article makes the point that genetics do not guarantee a disease, this argument for fetal full genome sequencing completely ignores that. It's arguing you should treat your kid differently on the basis that they MIGHT get a disease (a disease we associate with OMG OBESITY, by the way - I don't think THAT'S a mistake), marking them from early childhood on as someone who's less than, someone to be pitied, mocked, someone who's impure.
The rest of the article is from some other scientist all dismissive of "perfect baby quest" concerns, and all "WELL IF PARENTS WANT IT THEY SHOULD GET IT". Which is a shitty, shitty argument. "Well I want it" is no basis for a solid ethical decision. And her reasons for dismissing ethical dilemmas about the potential for parents terminating a pregnancy because they found out they fetus' eyes would be brown instead of blue, for instance, is "well not everyone would get it". Which doesn't eliminate the ethical problems at all! And there's a brief mention of "well fetuses can't consent", but it doesn't even remotely touch on what the ethics are of having your genetics on record before you're even born, much less consent. Can you imagine insurance companies with that information, for starters?
Then you get to the comments, and the first few are so deeply ableist and eliminationist, jesus fucking fuck. They straight up say there are no ethical problems with this, and raising a child with an illness or disability is not loving. "That's the unethical thing", one person says. You'd be a bad parent to not get it is strongly implied, because giving birth to a kid with a disease is abusive.
Yes folks, someone argues that it's unethical for people with disabilities to even be born.
I... holy shit. This person thinks I shouldn't have been born. This person thinks that my kid shouldn't be born, because I opted for absolutely zero genetic testing or screening. This person thinks that a whole fucking bunch of people I know shouldn't have been born, because they weren't born "perfect".
Holy. Fuckball. Shit.
So yeah, you're damn right I disagree.
I absolutely think there is an ethical debate to be had here.
In some respects, this is a debate many pregnant people and their partners have. The Man and I had a discussion about it, although in our case the discussion was short. While full genetic sequencing was not offered to us, we were offered other testing, including a nuchal translucency scan, a quad scan, chorionic villi sampling, and more. We turned them all down. Part of that, honestly, is because The Kid is at low risk of developing anything those are testing for. The bigger part of it is that even if The Kid did have something that was being tested for, such as trisomy 21 (better known as Down syndrome), we wouldn't do anything about it. We wouldn't terminate the pregnancy. We'd have The Kid, and we'd love them, and raise them the best we could. The Plan would not change.
We did get the "standard" anatomy scan between 18-24 weeks. If that had discovered that The Kid had a condition wherein there was no way they would survive to term or outside my uterus, at that point we would have terminated. If that had discovered Trisomy 18 (also known as Edwards syndrome), where the majority of fetuses die before birth, and approximately 8% of those who are born survive past the first year, that would have prompted more conversation, although we likely would choose to continue the pregnancy anyway, with monitoring.
Those are our decisions. (And shoutout to my midwife and OB who are 100% supportive of them.) And yet this commenter thinks those are unethical. Wow.
But if you think that if a fetus has a disease, or a potential for a disease down the road - because let's be real, 99% of what fetal genome sequencing would find would be the potential for a disease - then that fetus shouldn't be born, where do you draw the line? Obesity is considered a disease - should fetuses with higher risk of obesity not be born? Ehlers-Danlos? What about my Hashimoto's? What about schizophrenia? Cancer? Does it matter what kind of cancer? Diabetes? Does it make a difference if it's Type 1 or Type 2?
Because here's the thing - we all get sick. Each and every one of us. Every single one of us carries within us the potential for a whole host of things, from heart disease to cancer to fuck all knows what else. And genetics are not a guarantee of disease. We don't even know which genes are tied to which conditions, in most cases, much less how the complex interplay between genetics and environment determines who gets what and when. We just cannot predict, outside of a few things diagnosable in utero, what any fetus will get in their life after they're born.
Moreover, we rank diseases and disabilities. I've already done it a few times in just this piece. I think most if not all of us have that sort of internal ranking. "Well Hashimoto's is bad and an autoimmune disease, but it's not thyroid cancer" is another one I have. I also think that our wider society's rankings of disease and disability go beyond their treatability, the pain and suffering they cause, their risk of death, etc. and gets way in to aesthetics. See also, obesity is considered a disease. As I mentioned earlier, I don't think it's a mistake that "diabetes" was the example given by the bioethicist arguing for fetal genomic sequencing. We perceive Type 2 diabetes as preventable, as well as caused by obesity - which we also consider preventable. It's one of the diseases where society really likes to blame the person for getting it.
And to use that potential of disease or disability as a screener to determine which fetuses should be born or not is so abhorrent. Even if they do have the potential for something that's really scary, that's not a guarantee. Conflating giving birth to a fetus with the genetic potential for something you don't like with abusing that child, or with a death sentence, is mendacious as fucking hell, not to mention unethical.
Finally, the idea of health at every cost comes out here. As if we owe it to ourselves, to society, to our children, to be absolutely healthy. To do everything we can to be healthy. And let's be real, it's a real narrow definition of healthy that's always used here, and it absolutely includes "not fat". It also doesn't include "uses a wheelchair", "has a mental illness", or "has a chronic disease that limits their activity". We're all supposed to be thin, preferably white, happy, active, totally able-bodied people. Anyone outside those parameters need not apply.
Fuck that.
Fuck that narrow definition of health, and fuck anyone who thinks I owe fitting in to that definition to them or to "society". And fuck anyone who thinks that as a presumptive parent, I owe it to anyone for my children to fit that narrow, ableist, racist, hateful mold. Fuck the entire idea that if you and your body and mind are less than "perfectly healthy", that you shouldn't be here. Fuck that fuck that fuck that.
I briefly mentioned this article on Twitter yesterday: What Fetal Genome Screening Could Mean For Babies And Parents. That's a donotlink link, by the way. The article was published in Scientific American.
I'm not even sure I can adequately express how deeply I'm disturbed and frankly disgusted by the attitudes expressed by the scientists in the article. The first few commenters are even worse.
Basically, some bioethicists at Brigham & Women's Hospital in Boston, MA have published in The New England Journal of Medicine that YUP, parents should be able to get this with appropriate genetic counseling services.
That in and of itself isn't necessarily so bad, although "genetic counseling" leaves open a big door and there's lots of variation as to what it includes and entails. Then you get in to their reasons for arguing this. The big one cited is "Parents may emphasize diet and exercise more for a child at heightened risk of diabetes, for instance."
BECAUSE YES, SINGLING OUT A KID FOR DIFFERENT TREATMENT FROM DAY ONE FOR A DISEASE THEY DON'T HAVE BUT MIGHT GET IS SUCH A GREAT FUCKING IDEA, FOLKS.
I just... look. If you are different as a kid already, that's hard enough. Kids who have illnesses that require treatment, like special diet plans, medication, or other treatments visible in public, are incredibly stigmatized on a routine basis. And while the article makes the point that genetics do not guarantee a disease, this argument for fetal full genome sequencing completely ignores that. It's arguing you should treat your kid differently on the basis that they MIGHT get a disease (a disease we associate with OMG OBESITY, by the way - I don't think THAT'S a mistake), marking them from early childhood on as someone who's less than, someone to be pitied, mocked, someone who's impure.
The rest of the article is from some other scientist all dismissive of "perfect baby quest" concerns, and all "WELL IF PARENTS WANT IT THEY SHOULD GET IT". Which is a shitty, shitty argument. "Well I want it" is no basis for a solid ethical decision. And her reasons for dismissing ethical dilemmas about the potential for parents terminating a pregnancy because they found out they fetus' eyes would be brown instead of blue, for instance, is "well not everyone would get it". Which doesn't eliminate the ethical problems at all! And there's a brief mention of "well fetuses can't consent", but it doesn't even remotely touch on what the ethics are of having your genetics on record before you're even born, much less consent. Can you imagine insurance companies with that information, for starters?
Then you get to the comments, and the first few are so deeply ableist and eliminationist, jesus fucking fuck. They straight up say there are no ethical problems with this, and raising a child with an illness or disability is not loving. "That's the unethical thing", one person says. You'd be a bad parent to not get it is strongly implied, because giving birth to a kid with a disease is abusive.
Yes folks, someone argues that it's unethical for people with disabilities to even be born.
I... holy shit. This person thinks I shouldn't have been born. This person thinks that my kid shouldn't be born, because I opted for absolutely zero genetic testing or screening. This person thinks that a whole fucking bunch of people I know shouldn't have been born, because they weren't born "perfect".
Holy. Fuckball. Shit.
So yeah, you're damn right I disagree.
I absolutely think there is an ethical debate to be had here.
In some respects, this is a debate many pregnant people and their partners have. The Man and I had a discussion about it, although in our case the discussion was short. While full genetic sequencing was not offered to us, we were offered other testing, including a nuchal translucency scan, a quad scan, chorionic villi sampling, and more. We turned them all down. Part of that, honestly, is because The Kid is at low risk of developing anything those are testing for. The bigger part of it is that even if The Kid did have something that was being tested for, such as trisomy 21 (better known as Down syndrome), we wouldn't do anything about it. We wouldn't terminate the pregnancy. We'd have The Kid, and we'd love them, and raise them the best we could. The Plan would not change.
We did get the "standard" anatomy scan between 18-24 weeks. If that had discovered that The Kid had a condition wherein there was no way they would survive to term or outside my uterus, at that point we would have terminated. If that had discovered Trisomy 18 (also known as Edwards syndrome), where the majority of fetuses die before birth, and approximately 8% of those who are born survive past the first year, that would have prompted more conversation, although we likely would choose to continue the pregnancy anyway, with monitoring.
Those are our decisions. (And shoutout to my midwife and OB who are 100% supportive of them.) And yet this commenter thinks those are unethical. Wow.
But if you think that if a fetus has a disease, or a potential for a disease down the road - because let's be real, 99% of what fetal genome sequencing would find would be the potential for a disease - then that fetus shouldn't be born, where do you draw the line? Obesity is considered a disease - should fetuses with higher risk of obesity not be born? Ehlers-Danlos? What about my Hashimoto's? What about schizophrenia? Cancer? Does it matter what kind of cancer? Diabetes? Does it make a difference if it's Type 1 or Type 2?
Because here's the thing - we all get sick. Each and every one of us. Every single one of us carries within us the potential for a whole host of things, from heart disease to cancer to fuck all knows what else. And genetics are not a guarantee of disease. We don't even know which genes are tied to which conditions, in most cases, much less how the complex interplay between genetics and environment determines who gets what and when. We just cannot predict, outside of a few things diagnosable in utero, what any fetus will get in their life after they're born.
Moreover, we rank diseases and disabilities. I've already done it a few times in just this piece. I think most if not all of us have that sort of internal ranking. "Well Hashimoto's is bad and an autoimmune disease, but it's not thyroid cancer" is another one I have. I also think that our wider society's rankings of disease and disability go beyond their treatability, the pain and suffering they cause, their risk of death, etc. and gets way in to aesthetics. See also, obesity is considered a disease. As I mentioned earlier, I don't think it's a mistake that "diabetes" was the example given by the bioethicist arguing for fetal genomic sequencing. We perceive Type 2 diabetes as preventable, as well as caused by obesity - which we also consider preventable. It's one of the diseases where society really likes to blame the person for getting it.
And to use that potential of disease or disability as a screener to determine which fetuses should be born or not is so abhorrent. Even if they do have the potential for something that's really scary, that's not a guarantee. Conflating giving birth to a fetus with the genetic potential for something you don't like with abusing that child, or with a death sentence, is mendacious as fucking hell, not to mention unethical.
Finally, the idea of health at every cost comes out here. As if we owe it to ourselves, to society, to our children, to be absolutely healthy. To do everything we can to be healthy. And let's be real, it's a real narrow definition of healthy that's always used here, and it absolutely includes "not fat". It also doesn't include "uses a wheelchair", "has a mental illness", or "has a chronic disease that limits their activity". We're all supposed to be thin, preferably white, happy, active, totally able-bodied people. Anyone outside those parameters need not apply.
Fuck that.
Fuck that narrow definition of health, and fuck anyone who thinks I owe fitting in to that definition to them or to "society". And fuck anyone who thinks that as a presumptive parent, I owe it to anyone for my children to fit that narrow, ableist, racist, hateful mold. Fuck the entire idea that if you and your body and mind are less than "perfectly healthy", that you shouldn't be here. Fuck that fuck that fuck that.
Friday, December 6, 2013
What Is Actually Complicating My Pregnancy
[contents: medical, tmi, fat hate, scare-mongering]
Before I get any further: YES, THE KID (AND I) ARE BOTH FINE.
Okay!
It's a really popular position to assume that all fat folks who get pregnant have high-risk pregnancies, and the resulting babies have tons of problems, and it's just oh my god terrible and WHY WOULD YOU GET PREGNANT IF YOU'RE FAT DON'T YOU KNOW YOU AND YOUR BABY WILL DIE. See also: pretty much any mainstream article about obesity and pregnancy published in the last ten-plus years, or so many entries on My OB Said What?! (seriously, that site needs major trigger warnings).
Except that position is not actually based in reality.
I'm not saying that there are no risks associated with (note: ASSOCIATED WITH) being fat during pregnancy. Fat pregnant folks are at higher risk of gestational diabetes and preeclampsia. The fetuses of fat pregnant people are at higher risk of being born large for gestational age, of having neural tube defects, etc. etc. etc.
What even the American College of Gynecologists doesn't tell you is that while yes, obesity is associated with higher risks (that is, we have no idea about what causes any of these), including things like OH MY GOD A FOUR-TIMES GREATER RISK of things... the actual, numerical risk is not actually that high. Not that you can tell from the ACOG paper, or indeed, many reports, because they don't actually include the baseline risk numbers.
The thing is, when you multiply a very small risk by four, the risk is STILL SMALL. And all of these things? Occur in very small numbers of pregnancies. Are they scary and bad? Absolutely. But even if your risk is elevated for them, that is far, so far, from a guarantee you'll get them. Even if you are "morbidly obese", your risk of any of these complications is less than 10% - in some cases, WAY less than 10%. For example, the CDC says that your risk of gestational diabetes is between 2-10%. (They also say here that it's between 2-5%, and that "some - but not all [people] with gestational diabetes are overweight before getting pregnant". Not even the CDC is telling you the fat causes gestational diabetes, y'all.) Is your risk higher than in folks that aren't fat? In some cases, yeah. Is it ever YOU WILL DIE AND SO WILL YOUR BABY high, as it's often presented? Not. Even. Close. Fact is, the vast majority of fat pregnant folks have perfect fine, healthy pregnancies, and give birth to perfectly fine, healthy babies. But that doesn't sell diets and papers and ads and shit.
These also aren't the only complications of pregnancy though. (And I have my theories about why they're what we hear about... namely, WE CAN LINK THEM TO THE FAT OMG). Last week, I was referred to a maternal-fetal medicine specialist. Not because of my weight, thank fuck, because it really isn't complicating my pregnancy. I mentioned here that there was a finding at my midpoint ultrasound just before Thanksgiving that resulted in a referral. The finding wasn't about The Kid - The Kid looks fine, is measuring spot on for the due date, is extremely active, everything seems to be going well. The finding was that my cervix was a bit on the short side.
(Here is where I spent an hour trying to find how common a short cervix is in pregnancy, and found no good answers. Basically, judging by this study and a few others, at least 95% of all pregnant folks do NOT have a short cervix. It's actually pretty hard to find baseline risk information for any condition. So frustrating.)
Having a short cervix around this point in the pregnancy is associated with a higher risk of delivering early, and the shorter your cervix is, the higher the risk. I'm not in the highest risk category, but my cervix was short enough to up my risk, so I was referred to a specialist to be evaluated and see what, if any, treatment would be necessary. So I got a second ultrasound in a week, which again confirmed that The Kid looks just fine. The ultrasound was pretty entertaining. I'm pretty sure The Kid was napping when it started. Then after a minute or two of wand-on-belly, I started seeing hand-waving and kicking... and was kicked pretty constantly the rest of the day. Thank you for expressing your opinion, Kid. But the ultrasound also confirmed that yeah, my cervix is a little short.
No one is really sure why some cervixes are short. Theories include natural variation, inflammation, previous cervical trauma, and more. (Nobody links it to OMG THE FAT, SORRY HATERS.) There's also a difference between just a short cervix and what is called an incompetent cervix (and isn't that just a lovely health term). Some people will tell you that any cervix sufficiently short is incompetent, while others will say no, there has to be early dilation. Like many health topics, it can get somewhat confusing, but long story short, HAH, my cervix is just short, not incompetent.
I also mentioned earlier this week that I'd been all over Cochrane, checking to see what the actual risk was and what the treatment plans were. Cochrane kindly confirmed my assessment (higher than usual, but not panic time), and that of the two treatments (cervical cerclage, which is literally stitching the cervix closed, and progesterone supplementation), for people like me, who just have a short cervix, no signs of pre-term labor, and no history of pre-term delivery, progesterone is the way to go. It's associated with better outcomes all around, including reducing the rates of pre-term birth and neonatal complications. As I mentioned previously, the specialist I saw was on the same page as me - thank FUCK for doctors that read and understand research. And thank FUCK for doctors that love when their patients read the research. And a final, super-hearty thank FUCK for doctors who don't engage in fat shaming - my weight came up exactly ZERO times in this appointment, which is exactly how it should have been.
So I am now on supplemental progesterone. I go back in about a week for another special ultrasound to check my cervix, and so long as it hasn't gotten worse, then I get to go back in a month or so. Is it considered a complication? Yes (but technically, so is my well-controlled hypothyroidism ALSO NOT CAUSED BY FAT, THANKS HATERS). Is it a big one? No, and I'm thankful for it. I just have to take some additional meds and see another doctor once in a while, and that's okay for me.
Before I get any further: YES, THE KID (AND I) ARE BOTH FINE.
Okay!
It's a really popular position to assume that all fat folks who get pregnant have high-risk pregnancies, and the resulting babies have tons of problems, and it's just oh my god terrible and WHY WOULD YOU GET PREGNANT IF YOU'RE FAT DON'T YOU KNOW YOU AND YOUR BABY WILL DIE. See also: pretty much any mainstream article about obesity and pregnancy published in the last ten-plus years, or so many entries on My OB Said What?! (seriously, that site needs major trigger warnings).
Except that position is not actually based in reality.
I'm not saying that there are no risks associated with (note: ASSOCIATED WITH) being fat during pregnancy. Fat pregnant folks are at higher risk of gestational diabetes and preeclampsia. The fetuses of fat pregnant people are at higher risk of being born large for gestational age, of having neural tube defects, etc. etc. etc.
What even the American College of Gynecologists doesn't tell you is that while yes, obesity is associated with higher risks (that is, we have no idea about what causes any of these), including things like OH MY GOD A FOUR-TIMES GREATER RISK of things... the actual, numerical risk is not actually that high. Not that you can tell from the ACOG paper, or indeed, many reports, because they don't actually include the baseline risk numbers.
The thing is, when you multiply a very small risk by four, the risk is STILL SMALL. And all of these things? Occur in very small numbers of pregnancies. Are they scary and bad? Absolutely. But even if your risk is elevated for them, that is far, so far, from a guarantee you'll get them. Even if you are "morbidly obese", your risk of any of these complications is less than 10% - in some cases, WAY less than 10%. For example, the CDC says that your risk of gestational diabetes is between 2-10%. (They also say here that it's between 2-5%, and that "some - but not all [people] with gestational diabetes are overweight before getting pregnant". Not even the CDC is telling you the fat causes gestational diabetes, y'all.) Is your risk higher than in folks that aren't fat? In some cases, yeah. Is it ever YOU WILL DIE AND SO WILL YOUR BABY high, as it's often presented? Not. Even. Close. Fact is, the vast majority of fat pregnant folks have perfect fine, healthy pregnancies, and give birth to perfectly fine, healthy babies. But that doesn't sell diets and papers and ads and shit.
These also aren't the only complications of pregnancy though. (And I have my theories about why they're what we hear about... namely, WE CAN LINK THEM TO THE FAT OMG). Last week, I was referred to a maternal-fetal medicine specialist. Not because of my weight, thank fuck, because it really isn't complicating my pregnancy. I mentioned here that there was a finding at my midpoint ultrasound just before Thanksgiving that resulted in a referral. The finding wasn't about The Kid - The Kid looks fine, is measuring spot on for the due date, is extremely active, everything seems to be going well. The finding was that my cervix was a bit on the short side.
(Here is where I spent an hour trying to find how common a short cervix is in pregnancy, and found no good answers. Basically, judging by this study and a few others, at least 95% of all pregnant folks do NOT have a short cervix. It's actually pretty hard to find baseline risk information for any condition. So frustrating.)
Having a short cervix around this point in the pregnancy is associated with a higher risk of delivering early, and the shorter your cervix is, the higher the risk. I'm not in the highest risk category, but my cervix was short enough to up my risk, so I was referred to a specialist to be evaluated and see what, if any, treatment would be necessary. So I got a second ultrasound in a week, which again confirmed that The Kid looks just fine. The ultrasound was pretty entertaining. I'm pretty sure The Kid was napping when it started. Then after a minute or two of wand-on-belly, I started seeing hand-waving and kicking... and was kicked pretty constantly the rest of the day. Thank you for expressing your opinion, Kid. But the ultrasound also confirmed that yeah, my cervix is a little short.
No one is really sure why some cervixes are short. Theories include natural variation, inflammation, previous cervical trauma, and more. (Nobody links it to OMG THE FAT, SORRY HATERS.) There's also a difference between just a short cervix and what is called an incompetent cervix (and isn't that just a lovely health term). Some people will tell you that any cervix sufficiently short is incompetent, while others will say no, there has to be early dilation. Like many health topics, it can get somewhat confusing, but long story short, HAH, my cervix is just short, not incompetent.
I also mentioned earlier this week that I'd been all over Cochrane, checking to see what the actual risk was and what the treatment plans were. Cochrane kindly confirmed my assessment (higher than usual, but not panic time), and that of the two treatments (cervical cerclage, which is literally stitching the cervix closed, and progesterone supplementation), for people like me, who just have a short cervix, no signs of pre-term labor, and no history of pre-term delivery, progesterone is the way to go. It's associated with better outcomes all around, including reducing the rates of pre-term birth and neonatal complications. As I mentioned previously, the specialist I saw was on the same page as me - thank FUCK for doctors that read and understand research. And thank FUCK for doctors that love when their patients read the research. And a final, super-hearty thank FUCK for doctors who don't engage in fat shaming - my weight came up exactly ZERO times in this appointment, which is exactly how it should have been.
So I am now on supplemental progesterone. I go back in about a week for another special ultrasound to check my cervix, and so long as it hasn't gotten worse, then I get to go back in a month or so. Is it considered a complication? Yes (but technically, so is my well-controlled hypothyroidism ALSO NOT CAUSED BY FAT, THANKS HATERS). Is it a big one? No, and I'm thankful for it. I just have to take some additional meds and see another doctor once in a while, and that's okay for me.
Tuesday, December 3, 2013
A Brief Primer on Research
[contents: fat hate]
I wanted to write a little bit about how I find and evaluate research related to my health and health care.
Being able to find, understand, and evaluate research is a very useful skill, most especially when it comes to being a fat person in the doctor's office - or a pregnant person. (Or ANY person.) Yes, you should be able to go right in to the doctor's office and get appropriate, correct care. Aaaaaaand I and many other fat people have run in to the exact opposite. I also have problems with the public health campaigns about being informed patients, etc. and so on. Do I think it's amazing to be informed about your treatment? ABSOFUCKINGLUTELY. However, these campaigns put nearly all of the responsibility on the patient, and that's not where it belongs. Doctors need to step up their game (and yes, I realize they're as much a part of the system which incentivizes the exact opposite as anyone else... but that doesn't mean they're completely powerless. And yes, the system absolutely needs to change).
That being said, pretty much the only way that I've gotten appropriate treatment is doing my own research, and going in armed with it. But doing research on medical conditions, symptoms, treatments, can be really tough. Sure, the internet is great... and also filled with a lot of misinformation. Plus, getting access to the actual research journal articles is difficult and expensive for most people. I can get many of the actual articles... if I physically go to my alma mater's library. Then you have to evaluate whether the research was actually any good, then you run in to websites that purport to have information and it's rubbish... sorting through the utter flood of information can be tough.
But there's a couple of rules that can make it easier. Here's some of the ones I use:
Science reporting is shit.
If it is reported in a magazine, newspaper, whatever, it's shit. There are some blogs that actually do some good reporting - I link to some in the sidebar. But in general, science reporting in the media is terrible. Few if any reporters understand the difference between correlation and causation, few if any reporters are equipped with the skills to evaluate the quality of the research, and some of them will straight up report things that were not actually found in the study. Scientists are biased. So are journalists. Never doubt that they're selling you a narrative, not science.
I won't say "OH NEVER READ STORIES ABOUT NEW STUDIES", because shit, I do, and besides that, they're pretty unavoidable. But please, please, be super skeptical about them, and if you want to check them, go to the source - read at least the abstract of the study yourself to see what it actually says. Abstracts are usually available for free (and are the short summary of the research, usually about a paragraph long). Google Scholar can often help you find them. Another good place to check is PubMed.
For more information on how mainstream science reporting is usually crap, see this post on Well-Rounded Mama.
Most research does not - and CAN not - find the cause of something.
Following on from that first point, how many articles have you read about "OBESITY CAUSES X!", or similar? Probably a lot. The problem is, the vast, vast majority of research doesn't actually find causes. At best, it finds a correlation.
Doing research to determine the cause of something is actually quite complex. It's one of the things I learned to do in graduate school. It's not impossible, but it's also not often done. There are very strict conditions that have to exist in order to do it, and so many things you have to control for and account for and it's just really complicated. To get an idea of the complications, I link to Hills' criteria of causation in the sidebar. In order to prove causation, you have to meet those criteria. Most research doesn't. So any time you see "WE HAVE FOUND THE CAUSE OF X" in health research, be suuuuuper skeptical.
As for what research does usually find, it's a correlation - that is, "we find these two things occurring together pretty often, more often than we figure we would with random chance". You might also hear "is associated with" - that still means "correlation". The problem is, two things can be correlated, but that correlation tells you absolutely nothing about whether one causes the other - or if there's a third factor, unknown or unmeasured, that causes both. Shorthand that's popularly used for this concept is "CORRELATION DOES NOT EQUAL CAUSATION"; you might have seen that on Twitter. It's pretty key in research, and it gets forgotten a lot.
That's not to say that research that finds a correlation is useless - far from it. We can make some pretty good guesses based off of correlative research. But research that finds a correlation does not ever prove we have found the cause of something. So any time someone tells you "well X causes Y medical condition or biological effect", feel free to give them all of the side-eye.
Research, researchers, and publishers are biased - just like everyone.
A whole lot of research doesn't meet the criteria of good research design. Without taking extensive courses in research design, just keep this in the back of your head. There's also a fair amount of research that gets published that is straight up made up. Then there's the bias in publishing - a positive result, as in, "this thing we tried showed an effect", is way easier to publish than "we tried this thing and it didn't work". The latter does get published sometimes, but not as often.
There's also dominant narratives in research - it's why you don't hear about the numerous studies that show that weight loss really is difficult and doesn't last long term, and you DO hear about all of the studies that show that oh this new thing causes weight loss! The acceptable story right now, in medicine, research, reporting, is that OMG FAT IS BAD and WEIGHT LOSS IS GOOD, and things that are contrary to those notions don't get the press. It's also why you often see studies about obesity that say one thing in their results section (e.g. "no significant reduction in weight was found in the study population") and another in their conclusion ("this intervention is an effective weight loss treatment and should be recommended") I WISH I WERE MAKING THIS UP.
Then there's my next point...
Follow the money.
Conflict of interest is a real thing in science, and it's a big way that bias gets introduced. Check out who funds studies - chances are, if it's a study that trumpets weight loss, or a weight loss program that works, it was funded by the person or company who invented said program, or who benefits financially from weight loss. Similarly, studies that find that sports drinks are effective are almost always funded by companies that make sports drinks. Isn't it funny how that works out?
Well, no, it's not funny, because it's bullshit, and it leads to a lot of really crap research. And it's also not to say that, say, federally funded research isn't biased. But it's more likely to be more biased if the funder benefits financially from it.
Check Cochrane.
The Cochrane Collaborative is an independent, international organization dedicated to cataloguing and evaluating health-related research. They are highly respected, and very reliable. I won't say they're completely unbiased, because no one and nothing is, but they work really hard to NOT be.
You can probably find what they call a "Cochrane Review" on just about any health topic. What they do is they comb the lists of all research trials related to a topic, evaluate the quality of the trials, then combine them all to come up with what they are all in general saying. They provide this in multiple languages, and also do a "plain-language" summary. For free.
For an example, here is their review regarding weight loss in pregnancy for obese women. WELP SORRY MIDWIFE YOUR RECOMMENDATIONS ARE WRONG AND NOT BASED IN THE SCIENCE WE HAVE.
You can also view the Cochrane Summaries, which are the short, versions of the reviews. They can be really helpful to print off and bring to your doctor's office. I was recently all up in them because of a finding on an ultrasound I had last week (and helpfully, they confirmed what I thought - that it's not that big of a deal, and if we wanted to do anything, what I got recommended was the thing to do - the finding was about me, not The Kid, btw). I went to my doctor's office with the relevant summaries printed and SHOCKER, did not even need them, because she was as up on the research as I was. But if she had recommended something that I knew from my reading wasn't going to be effective, I could whip out the summary and go "okay but that's not what the research says", and have the relevant research right there.
Seriously Cochrane is what policy-makers, health care professionals, pretty much everyone uses. Your doctor has probably heard of them, and if you say "Well here's the Cochrane review about that", most will actually listen. If they still say "well that's nice but" after you give them evidence like this... probably find a new doctor if you can. Seriously.
**********
So those are the rules I use when reading research. Anyone else got helpful tips to share?
I wanted to write a little bit about how I find and evaluate research related to my health and health care.
Being able to find, understand, and evaluate research is a very useful skill, most especially when it comes to being a fat person in the doctor's office - or a pregnant person. (Or ANY person.) Yes, you should be able to go right in to the doctor's office and get appropriate, correct care. Aaaaaaand I and many other fat people have run in to the exact opposite. I also have problems with the public health campaigns about being informed patients, etc. and so on. Do I think it's amazing to be informed about your treatment? ABSOFUCKINGLUTELY. However, these campaigns put nearly all of the responsibility on the patient, and that's not where it belongs. Doctors need to step up their game (and yes, I realize they're as much a part of the system which incentivizes the exact opposite as anyone else... but that doesn't mean they're completely powerless. And yes, the system absolutely needs to change).
That being said, pretty much the only way that I've gotten appropriate treatment is doing my own research, and going in armed with it. But doing research on medical conditions, symptoms, treatments, can be really tough. Sure, the internet is great... and also filled with a lot of misinformation. Plus, getting access to the actual research journal articles is difficult and expensive for most people. I can get many of the actual articles... if I physically go to my alma mater's library. Then you have to evaluate whether the research was actually any good, then you run in to websites that purport to have information and it's rubbish... sorting through the utter flood of information can be tough.
But there's a couple of rules that can make it easier. Here's some of the ones I use:
Science reporting is shit.
If it is reported in a magazine, newspaper, whatever, it's shit. There are some blogs that actually do some good reporting - I link to some in the sidebar. But in general, science reporting in the media is terrible. Few if any reporters understand the difference between correlation and causation, few if any reporters are equipped with the skills to evaluate the quality of the research, and some of them will straight up report things that were not actually found in the study. Scientists are biased. So are journalists. Never doubt that they're selling you a narrative, not science.
I won't say "OH NEVER READ STORIES ABOUT NEW STUDIES", because shit, I do, and besides that, they're pretty unavoidable. But please, please, be super skeptical about them, and if you want to check them, go to the source - read at least the abstract of the study yourself to see what it actually says. Abstracts are usually available for free (and are the short summary of the research, usually about a paragraph long). Google Scholar can often help you find them. Another good place to check is PubMed.
For more information on how mainstream science reporting is usually crap, see this post on Well-Rounded Mama.
Most research does not - and CAN not - find the cause of something.
Following on from that first point, how many articles have you read about "OBESITY CAUSES X!", or similar? Probably a lot. The problem is, the vast, vast majority of research doesn't actually find causes. At best, it finds a correlation.
Doing research to determine the cause of something is actually quite complex. It's one of the things I learned to do in graduate school. It's not impossible, but it's also not often done. There are very strict conditions that have to exist in order to do it, and so many things you have to control for and account for and it's just really complicated. To get an idea of the complications, I link to Hills' criteria of causation in the sidebar. In order to prove causation, you have to meet those criteria. Most research doesn't. So any time you see "WE HAVE FOUND THE CAUSE OF X" in health research, be suuuuuper skeptical.
As for what research does usually find, it's a correlation - that is, "we find these two things occurring together pretty often, more often than we figure we would with random chance". You might also hear "is associated with" - that still means "correlation". The problem is, two things can be correlated, but that correlation tells you absolutely nothing about whether one causes the other - or if there's a third factor, unknown or unmeasured, that causes both. Shorthand that's popularly used for this concept is "CORRELATION DOES NOT EQUAL CAUSATION"; you might have seen that on Twitter. It's pretty key in research, and it gets forgotten a lot.
That's not to say that research that finds a correlation is useless - far from it. We can make some pretty good guesses based off of correlative research. But research that finds a correlation does not ever prove we have found the cause of something. So any time someone tells you "well X causes Y medical condition or biological effect", feel free to give them all of the side-eye.
Research, researchers, and publishers are biased - just like everyone.
A whole lot of research doesn't meet the criteria of good research design. Without taking extensive courses in research design, just keep this in the back of your head. There's also a fair amount of research that gets published that is straight up made up. Then there's the bias in publishing - a positive result, as in, "this thing we tried showed an effect", is way easier to publish than "we tried this thing and it didn't work". The latter does get published sometimes, but not as often.
There's also dominant narratives in research - it's why you don't hear about the numerous studies that show that weight loss really is difficult and doesn't last long term, and you DO hear about all of the studies that show that oh this new thing causes weight loss! The acceptable story right now, in medicine, research, reporting, is that OMG FAT IS BAD and WEIGHT LOSS IS GOOD, and things that are contrary to those notions don't get the press. It's also why you often see studies about obesity that say one thing in their results section (e.g. "no significant reduction in weight was found in the study population") and another in their conclusion ("this intervention is an effective weight loss treatment and should be recommended") I WISH I WERE MAKING THIS UP.
Then there's my next point...
Follow the money.
Conflict of interest is a real thing in science, and it's a big way that bias gets introduced. Check out who funds studies - chances are, if it's a study that trumpets weight loss, or a weight loss program that works, it was funded by the person or company who invented said program, or who benefits financially from weight loss. Similarly, studies that find that sports drinks are effective are almost always funded by companies that make sports drinks. Isn't it funny how that works out?
Well, no, it's not funny, because it's bullshit, and it leads to a lot of really crap research. And it's also not to say that, say, federally funded research isn't biased. But it's more likely to be more biased if the funder benefits financially from it.
Check Cochrane.
The Cochrane Collaborative is an independent, international organization dedicated to cataloguing and evaluating health-related research. They are highly respected, and very reliable. I won't say they're completely unbiased, because no one and nothing is, but they work really hard to NOT be.
You can probably find what they call a "Cochrane Review" on just about any health topic. What they do is they comb the lists of all research trials related to a topic, evaluate the quality of the trials, then combine them all to come up with what they are all in general saying. They provide this in multiple languages, and also do a "plain-language" summary. For free.
For an example, here is their review regarding weight loss in pregnancy for obese women. WELP SORRY MIDWIFE YOUR RECOMMENDATIONS ARE WRONG AND NOT BASED IN THE SCIENCE WE HAVE.
You can also view the Cochrane Summaries, which are the short, versions of the reviews. They can be really helpful to print off and bring to your doctor's office. I was recently all up in them because of a finding on an ultrasound I had last week (and helpfully, they confirmed what I thought - that it's not that big of a deal, and if we wanted to do anything, what I got recommended was the thing to do - the finding was about me, not The Kid, btw). I went to my doctor's office with the relevant summaries printed and SHOCKER, did not even need them, because she was as up on the research as I was. But if she had recommended something that I knew from my reading wasn't going to be effective, I could whip out the summary and go "okay but that's not what the research says", and have the relevant research right there.
Seriously Cochrane is what policy-makers, health care professionals, pretty much everyone uses. Your doctor has probably heard of them, and if you say "Well here's the Cochrane review about that", most will actually listen. If they still say "well that's nice but" after you give them evidence like this... probably find a new doctor if you can. Seriously.
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So those are the rules I use when reading research. Anyone else got helpful tips to share?
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