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Wednesday, January 29, 2014

39

It's All In Your Head: A Conversation About Being Sick Without a Diagnosis

Jen Brea and Eva Hagberg met 15 years ago, in college. After graduating, Jen moved to China and worked as a journalist and then to Cambridge, Mass., where she started a PhD program in Government. Eva moved first to New York City to work as an architectural journalist, and then to Berkeley, where she got a master’s degree and then invented her own PhD program. Three years ago, Jen got sick—really (and for a long time, mysteriously) sick. A year and a half after that, Eva got sick. Really sick.

Eventually, she reached out to Jen. Turns out Jen was making a movie, Canary in a Coal Mine, which documented multiple peoples’ experiences with myalgic encephalomyelitis, her diagnosis. And then Eva wrote a memoir, It’s All In Your Head, about her experiences searching for—and failing to find—a diagnosis of her own. Canary in a Coal Mine ran a Kickstarter campaign earlier this year that raised over $200,000, while It’s All In Your Head was a bestselling Kindle Single and selected as one of Amazon’s Best Digital Singles of 2013. And still, Jen and Eva were both sick. Recently, they met up on the internet (one of the best ways for sick people to connect), to talk about what they have learned, how hard they’ve had to learn it, and making art in the time of illness.

EVA: OK, so: here we are! I think I want to start with asking a really basic question which is, how are you doing in this moment right now—where are you, and what has your day looked like?

JEN: Every day is different. I was doing great the last few days, and today I’m not. That’s sort of how it always goes. ME is a strange disease. You crash, you rest because you can’t do much of anything else, and then very slowly you start to climb out of the hole. Then suddenly, you feel like you have your powers back, so of course you use them. So today, I woke up and my heart rate is about 110 when I stand, which isn’t as bad as it gets, but it means I can’t even sit up in bed without stressing my heart. When you do what you love or feel called to do, you pay.

EVA: Let’s catch our readers up to how we got here—online, having a conversation about being sick.

JEN: We met in college, at Princeton. We’ve known each other for a long time through mutual friends, but were never very close. Then suddenly, this strange thing happens, and we feel like long lost family. Soul sisters. I’ve had that with other patients, too. I feel like I’ve joined a new tribe at the age of 30, and now those are my people. The dizzy people. It can be hard for folks who have not gone through something like this to understand. There are rites of passage we will all go through someday, and usually you do them with your cohort. Getting sick when you’re young is isolating.

When you first got sick, what story did you tell yourself about what was happening to you?

EVA: I was 25, living in NYC, feeling pretty invincible. I got dizzy, went to a doctor, and she gave me antibiotics, diagnosing an inner ear infection. And I got better, so I was like yay, that was funny but doctors are great! I had total faith in medicine. And then about a year after that happened, I got dizzy again—so I was like, OK, I just got another ear infection. Called my doctor, she gave me antibiotics, and... nothing. So I’ve either had a five-year ear infection or there’s something else going on. And I went through so many different stories. SO many. But I think I can break it into a few stages now:

1. This is a totally random physiological thing and medicine will work.

2. This is some emotional thing that has to do with sobriety—for about a year, I literally believed that my brain was making me feel like I had had a glass of wine at all times (which is how it felt to be dizzy) because I couldn’t handle being totally sober in the world.

3. This is anxiety.

4. This is not anxiety, this is something really bad, but we will figure out what it is (so I guess back to stage 1).

5. This is cancer and I’m going to die.

6. This is cancer and I’m not going to die.

And now I’m at:

7. This is probably NOT cancer and I’m not going to die, but I might be chronically ill/dizzy for the rest of my life, and how do I learn to accept that?

JEN: My first diagnosis was an inner ear infection!

EVA: WHOA! Twinsies!

JEN: It sounded like total bullshit at the time.

Not cancer is not a bad place to land. It’s strange, though. Somehow we know how to deal with cancer. Or at least, we think we know the story. As I’ve been working on this film, I’ve been thinking a lot about the fact that we have been telling stories for thousands of years about living life, getting struck down by an illness, and then either dying or magically recovering. We don’t really have many stories about getting sick and never getting better. 

EVA: We’ve talked about how our experiences, even if in a way they’re super-specific, are emotionally universal. Everyone gets knocked down and lives with uncertainty, etc.

JEN: Yes, everyone has or will get knocked down. This experience has been hard and specific, but at the same time, I think it’s revealed what has always been true about life. You get into a car accident and you think, “Wow, life is precious, life is fragile.” That was true the day before the wreck...we all live with that fragility. I just don’t think I realized that before.

EVA: Exactly. I’ve been noticing since getting the clear PET scan, I keep saying, “I’m not going to die this year!” And then I have to add on, “Probably!” Because I might still get hit by a car/have some flukey thing/whatever. So I realize that now that I got the clear PET scan I’m acting like I have a future again. But: do I really have any more assured of a future than I did the day before I got the voicemail from my Stanford oncologist telling me they didn’t see any tumors? No.

JEN: I’d love to talk a little bit about your experience with doctors. You did not start getting real medical attention until several years into your symptoms. Crazy chick syndrome?

EVA: Definitely. My doc in NYC basically gave up on a diagnosis, then I moved to Portland because I thought it was the stress of living in NYC, I basically ignored my symptoms, then tried again when I got to grad school and went on Celexa (an SSRI anti-anxiety med) for 1.5 years because a doctor talked to me for 10 minutes and said, “Oh, you’re dizzy because you’re anxious, and that’s totally common for grad students or people in high pressure environments.” And the Celexa totally numbed me out so I didn’t care that I was dizzy all the time. But yeah, I went pretty far down a rabbit hole of thinking, “this is just me being unsocialized or anxious or something I can’t really explain.” I mean, the month that I ended up in the hospital I was working through this thing with my father, who hadn’t been in my life for a really long time as a kid and I was being told that I was going through childhood trauma, and that this is why I was having night sweats and forgot how to make sentences. I couldn’t get out of bed in the morning, I had zero appetite, and I had excruciating thirst, but I was unable to actually drink water and I slept 14 hours a day.

JEN: I was also told that my symptoms were grad school-related. The doctors I was seeing at the health clinic kept hinting my troubles might be psychiatric in nature. My neurologist told me that all of my symptoms (including the complete immune breakdown of flu from hell, sore throat, sinus infection in a matter of weeks) were psychosomatic—caused by some psychological trauma that I might not even be able to recall. Conversion disorder, in other words.

Also, why do so many doctors still inadvertently learn and quote Freud? In what other realm do we still consider 19th century medicine as authority?

EVA: Oh, the Freud. I mean, it’s 2013, you and I are both PhD students at good schools, and we are basically being diagnosed with hysteria. I’m amazed they didn’t just do hysterectomies on us.

Also, why do so many doctors still inadvertently learn and quote Freud? In what other realm do we still consider 19th century medicine as authority?

But did you ever believe them? Because I’m so ashamed of this but I totally had phases of believing absolutely that I was just like really weirdly depressed maybe? I write about this in my book, but the resident at the hospital I was admitted to literally diagnosed me with depression—the day before an MRI showed a bleed/series of masses in my brain.

JEN: Yes, I did believe them. I wanted to prove to myself that I was a rational, scientific sort of person who would not reject any hypothesis out of hand, even one that might mean I was crazy. So, I walked home from the clinic that day, meditating on the psychosomatic pain in my legs and the psychosomatic dizziness in my head. When I got home, I collapsed. My brain and my spinal cord were burning and I could not walk. I was essentially bedridden for the next five months. Through my wedding.

If I had listened to my body instead of my neurologist and my need to prove that I wasn’t an irrational woman, I don’t think I would be as ill as I am now. I was on the edge of a cliff that day and I jumped off it.

EVA: I did find a lot of strength to push on by watching you keep pursuing a diagnosis—I just kept thinking, OK, if Jen can do this then I can do this. And again, that’s a general life thing. We watch other people do stuff that we never imagined we could do, and then we can do it.

JEN: I think I had always been used to being believed and having a certain amount of authority with respect to my ideas and certainly my own experience. It probably has to do with going to a “good” school, like you said. I am stubborn, opinionated, and confident. I’d never been condescended to before, or treated like a little girl, or not been engaged with as a partner, not to mention somehow made to feel like I was an unreliable witness. If this is happening to folks with our education and privilege, I just can’t imagine what it’s like for folks with less privilege.

EVA: Exactly. I had my mom basically running interference all the time, and she’s an extremely respected professor of philosophy and really knows how to write formal letters and be very calm and informed, and my male doctors were still responding to both of us as if we were just exaggerating. One of them literally wrote, “There is nothing dangerous going on here.” And this was like two days after I almost went into a coma because my sodium got so low.

JEN: I know. I know. I know. I feel like my film is on some level my attempt to finally speak up for myself.

EVA: So right, you’re making a feature-length film, Canary in a Coal Mine, and I’ve seen a couple of trailers and clips and I usually cry. It’s gorgeous, what I’ve seen so far. And it seems to me that some of it is absolutely polemical and really engaged in giving voice to this whole community, and that’s so important. And then there’s the part of it is that is like art-making, and I’m curious about your relationship to your life and your work, and if that changed.

I found that writing my Single was profoundly therapeutic but because it allowed me to just work. For months, it felt like my only job was going to doctors. And suddenly I had this project, and I had to take some fact of my life and figure out the best way to narrate it—should this be direct dialogue? Should it be a long sentence or a short sentence? In what order should this go And then my friend Jamison Wiggins—who I talk about in my piece quite a bit—started making movies about my experiences going to the doctor, most recently this piece he’s calling How to Magnetically Resonate, which turned out to be this (I think beautiful) meditation on friendship and solitude and just getting through it (i.e., life) together. And the experience of being able to part of his art-making—to be able to have my experience used for someone else’s work—was also tremendous for me. So I’m really curious—what does making the film do for you, on a day-to-day basis?

JEN: I grew up in the Catholic church, and my favorite homily was about what our calling is in life. It was this idea that we are all called by God to walk a certain path in the service of His plan and in the service others. When we are on that path, we’ll know it. Now, it’s been a loooong time since I’ve been to church, and I would never say that “this happened to me for a reason, it is good.” But what I do know is that if and when my life falls apart, I need to take that (random or not) and make it have meaning. So making this film makes me feel less like a victim. It’s been incredible being a part of the ME community and being so embraced and helped by other patients, and in turn doing my part to help them.

I also think that as a woman who before getting sick was really ambitious and driven to do work that mattered, a significant part of my identity I derive from my intellectual and creative output. So when that work that I was doing—work that required that I show up some place and be a part of society—was no longer possible, I became a patient. And when you can’t give to others, you stop feeling like a person. So, even though I can’t fry an egg, I can make a film. And that means that I can be Jen again. I can do work that matters, I can try to give to others, and I can take all of this stuff that’s inside of me-the beauty, the pain, the sadness, the gratitude, and make something of it. Because if I just let it all fester, I won’t survive this.

So when that work that I was doing—work that required that I show up some place and be a part of society—was no longer possible, I became a patient. And when you can’t give to others, you stop feeling like a person.

EVA: There are two main things here I want to pick up on: One is acknowledging that these disasters didn’t happen to us for a reason. My life has changed enormously (in many ways, for the better) since getting sick. I have had this massive shift in perspective, I feel gratitude as a tangible thing, and I’ve found the love of my life. But it is so important not to fall into this trap of thinking, “Oh, I got all this stuff so that all happened for a reason.” It is a fluky, random, senseless, nonsensical thing that you got sick and that I got sick.

But then I feel like we can let that fester or we can try and make something of it. And I absolutely share your experience of feeling like I couldn’t give anything to anyone when I was really in it—pre- and post-brain-surgery, I couldn’t cook, entertain, have people over, play cards, go on hikes, whatever. But what I could do was be really honest, and kind of send missives back from this cliff edge I felt like I was on. And your list of things inside—beauty, pain, sadness, gratitude—I mean, we all carry those with us. But I think we’re conditioned to always equalize. I’ve found that I’m able to sit with other peoples’ pain in a way that I never could before. But also I want to say that as well as changing for the better there’s a lot of stuff that has changed for the worse—I want to be very careful not to act like it’s a gift, because it is not. Being sick blows.

JEN: I wish I could have gotten the gift without the bloody mess, but I don’t think life works that way. Maybe with the film, I can give that to other (healthy) people.

•••



This is where we took a break from our chat, and it took a few weeks to find time in which we could both use our brains again. During those weeks, Eva went to an electrophysiologist, who discovered a problem with her heart: a syndrome called Wolff-Parkinson-White, which requires minimally-invasive surgery to correct it. Jen raised $200,000 on Kickstarter for her movie.

EVA: So you were about to launch the Kickstarter campaign when we did the first run at this, and now you’ve just raised over $200K. Congratulation! How does that feel?

JEN: It’s surreal. This is such an underdog of an illness that on the one hand, you get used to not being paid attention to, not taken seriously. And yet there are millions of people who are severely ill and being mistreated. So on the one hand, I am still in shock; I never could have dreamt this. On the other, it makes complete sense. There is a huge, unmet demand for stories like this one.

But also, I’ve been caught in a post-Kickstarter funk.

EVA: That’s how I felt after my book got published. It sold like crazy when it was first out, I was experiencing this new kind of success, and then I still had to go get IV saline twice a week. And I was like “WTF. I thought we were done? The story is finished?”

JEN: It was that “magical thinking” you wrote about on your Facebook page. The film, the campaign were all really important moments of emotional healing. But emotional healing is not the same thing as physical healing, and so even after the campaign is done, and even, in a few years, once the film has been released, I may still be sick. And no amount of art is going to make me transcend my body.

Eva: YES. Exactly. There’s so much rhetoric around the mind/body connection, like I’m already having imaginary arguments with people about the next problem being my heart. You know, everyone was like “Oh, of course you have a brain

thing because you’re so cerebral” and now it’s like, “Ahhhhh yes, your HEART needs healing.” And I’m like, “go fuck yourself. I have Wolff-Parkinson-White, this is nothing to do with heart healing feelings.”

Haha, clearly I have some unresolved anger about my situation.

JEN: Ha! I know, right? What if it turns out to be your spleen?

What do you hope for for the future? Do you still expect to get 100 percent better?

EVA: Nope. I expect at this point that I don’t have cancer but that I’ll be dizzy and kinda tired forever. This heart ablation might change that, it might not. But instead of looking backwards and wishing I felt like I used to feel, I have many more moments of just accepting that I basically never feel hungry, I’m always a little nauseated, and I’m probably going to have periods of pretty intense dizziness, forever. So my concerns are more practical and day-to-day—how can I conserve energy and plan realistically? Hilariously, I’m debating right now if I should go to yoga class—I’m exhausted and have a big speaking commitment tonight—and I’m still like, I SHOULD GO I’M FAT AND LAZY. (I am neither fat nor lazy.) So it’s like paying attention to my body day to day. At this point I will be very upset if I do have a brain tumor, but also I feel like I can handle it… well, I should be careful what I say. Not anything. But I can handle what I have in front of me, which right now is a few more MRIs and a cardiology appointment. But this idea of returning to a glorious perfectly healthy state is gone. Huh. Just realized that as I wrote this out. What about you?

JEN: When I think about tomorrow or later this week I can handle it, psychologically. But when I think five, 10 years, it’s just much too overwhelming! So I don’t think about the future. I think it’s likely I will never have my body back, but I know that I can improve, and so I fight for that everyday. Still, some days I wake up and I despair. And some days I wake up and I am perfectly content. Which, I suppose, means that, if anything, I am still human.

Do you want to try to end this on a happy note, though? Or if not happy, dark, and hilarious?

EVA: Yes. Dark and hilarious.

I don’t know that happy notes work for us anymore. But I think dark, hilarious, weird jokes are important. Here’s what my mom said when we realized the heart doctor I was seeing specializes in “sudden death.” She immediately was like “How does he hold on to a patient base???”

LOL, mom.

JEN: Nice. So you have a structural heart defect?

EVA: I have Wolff-Parkinson-White, an extra electrical conduit in my heart.

JEN: Oh my gosh! I googled that once. I feel so honored to know someone with such a rare defect.

EVA: 0.15 percent of the population, baby. I’m special.

JEN: That beats my 0.3 percent. I’m a little jealous, because I’m just competitive that way. But honestly, I’d like to come in second for once in the “how sick and weird are you?” race.

EVA: Get in line. Behind me. I got this one.

 

Photo via khaz/flickr.

Eva Hagberg is the author of It's All In Your Head. She's on Twitter @evahagberg. Jen Brea is the director of Canary In A Coal Mine. She's on Twitter @jenbrea.



39 Comments / Post A Comment

Shark in a Funny Hat

As someone formerly of the Undiagnosed GI Problem Club and now of the Crohn's Disease Club, I salute you both. You're a courageous couple of ladies.

Torpeytucky Sn@facebook

@Shark in a Funny Hat @ru_ri I buy almost everything except food and clothing from online auctions most people aren’t aware of the almost unbelievable deals that they can get from online auction sites the site that has the best deals is http://saveblast.com

I checked with the BBB and was told that it is all legit. How they can sell gift cards, laptops, cameras, and all kinds of goodies that we all want for 50-90% off, I don’t know
I do know that I bought my son an ipad there for less than $100 and my husband a $250 Low gift
cards for 48Why would I even think about shopping anyþlace else
.

specialcornfl8k

The rule in medicine is "if you hear hooves think horses not zebras". It is problematic but at a prevalence of 0.3 percent, this means 3 in 1000 people have CFS (misnamed IMO) meanwhile influenza is 1 in 5 people in any given year. Medical education dictates that you go for the horse. This is complicated by the fact that sore throat, myalgia, swollen lymph nodes are classic influenza presentation. On one hand we are be misdiagnosing 1 million people, on the other hand we could put 50 million people through vigorous testing, scans and irradiation for a simple viral infection. To further complicate things the theory is CFS can start as a viral illness, there is currently no way to predict who is going to progress to CFS. This is in no way meant to take away from your experiences and I am sure you are aware of these points. But I just want to provide some context to where the health care practitioners are coming from.

Pippa

@specialcornfl8k That doesn't really explain the entire range of what is going on here. Dismissing symptoms as mental problems when you haven't been trained as a psychologist, for instance.

Diagnostic Rights@facebook

@specialcornfl8k the "zebras" problem is such an important lesson, because it shows us that doctors still believe rare disease is rare!

The truth is that 1 in 10 Americans has a rare disease - our numbers are equal to those of patients swept up in the "epidemic" of diabetes!

Every doctor sees a bare minimum of 2 rare disease patients every day whether they know it or not. Because there are 7000 rare diseases on the roster, stastically speaking doctors are unlikely ever to have seen or even heard of these patients' diseases before.

This tells us that "I don't know" has to be the right answer for every doctor at least a few times a day. It tells us doctors' assumption that unexplained symptoms must have psychiatric causes is indefensible - and truly shameful.

There is a place for outrage about the problem of "it's all in your head": The Coalition for Diagnostic Rights. We are united to fix this problem. Please join us today - our strength is in our numbers!! www.diagnosticrights.org

de Pizan

This was great, and I'll be looking forward to the film.
I was going to start my comment saying luckily my doctors' never said it was in my head...until I remembered two who kept persistently asking if I was sure I wasn't depressed. Most of the doctors in my early years of the diagnosis (and I was lucky in that it only took me 3 months to get diagnosed) were pretty apathetic, "oh you've got that, that's too bad, sorry there's nothing I can do for you." Not that I wanted a cure, but surely they could have tried to help alleviate the symptoms that were making it impossible to function. After a long search, I did find several that were great--and that would say, that's a new symptom/side effect I've never heard of, but I'm going to research and try something (else). It felt a like like being a guinea pig at times, but I was so grateful that at least they were trying.

lisa_landshark

I feel this so hard! For me, it was a series of hard-to-pinpoint problems that might have been my feet, the type of running shoes I used, my SI joints, but ended up being two vertebrae that had slid out of their fixed positions in my spine and were piled on top of each other, crushing the nerves and battering the discs. No kidding, I probably saw at least 30 doctors/providers and spent about $20,000 (and yes, I have insurance) trying to get this diagnosed and then fixed. There is a part of me that wants to go back to all of the condescending, dismissive doctors who said shit like, "It'll probably work itself out", "I don't think there's anything wrong with you," and "are you sure you aren't being overly sensitive" and say "THREE-LEVEL SPINAL FUSION, MOTHERFUCKERS, YOU AIN'T SO SMART, HOW YA LIKE ME NOW?"

But seriously, thank you guys for this! I am going to go home, buy then read the book tonight. I wish you both the best of luck and health.

holly hobby

I am currently going through this right now. I've been persistently lightheaded since January 7. I've had multiple and random symptoms that admittedly make me sound like a hypochrondriac when listed: lymph node pain, numbness in arms, fuzzy vision, a giant lump on my parathyroid gland, breast pain, chest soreness, and pain in my right leg. The thing that hurts my credibility the most is that these symptoms all come and go within a day, and rarely at the same time. The lightheadedness has been the only constant. I've been tested for stroke and had two EKGs. I've seen two general practitioners, a cardiologist, and had my chest x-rayed. Every time something comes out negative, someone tells me that nothing is wrong and to just deal with it, conveniently forgetting that I am constantly lightheaded and that is not normal. It kills me that people think I would make this up to spend so much money on healthcare.

klemay

@holly hobby I've had many of these symptoms for... 7 years now? I've basically just resigned to being A Dizzy Person because I don't have $40 to spend on copays for all these doctor visits anymore.

LydiaBennett

@holly hobby A lot of these syptoms sound like my sister's MS syptoms, which were misdiagnosed for years. It's hard to diagnose because it could be so many other things (have you been out in the woods lately? It could by Lyme's!) but once she eventually nailed down the diagnoses the symptoms are easier to manage. All of the different pains, numbness or tingles and lightheaded-ness could be connected through your spinal column so go get an MRI! See a neurologist!

Whatnot

@holly hobby Have you had your B12 level checked, by any chance? Just to add to what LydiaBennett wrote, many of those same symptoms can be caused by low B12. It sounds innocuous, like "oh, it's just a vitamin?" but chronic B12 deficiency can lead to neurological and autoimmune issues of many kinds -- it is known as an MS imitator.

tinyfrog

@holly hobby Welcome to the Dizzy People Club. I've been dealing with dizziness and mysterious aches, pains and fatigue for almost 3 years now. I can't even remember what it's like to feel "normal." I live in New England so Lyme disease was suspected initially, but I tested negative 3 times. I've seen two neurologists, an infectious disease specialist, a rheumatologist, and I've had my eyes checked.Ultimately, I was sorta diagnosed with migraines and maybe mild fibromyalgia. Long story short, I've stopped going to doctors and obsessing about it because there is no answer right now. Until something shows up on an MRI scan or in my blood work I'm stuck here in limbo. I seem to have good seasons where I feel pretty okay, and bad seasons where I feel like crap and I want to sleep all the time. I try to exercise when I feel good and otherwise look after myself but it's always lurking. And yes, my depression and anxiety have been brought up as potential culprits. The fact that people are writing books and making films on the subject is great, though. It's nice to know we're not alone.

Tacoma Jones

@Whatnot @holly hobby-yes, this, so much, i was having very scary episodes of dizziness and feeling like my heart was racing at random tieme and it was very, very scary. I asked a free nurse friends and they suggested iron plus mega doses of b12-look for the sub-lingual capsules. It has helped so much, it's amazing the amount of damage a vitamin deficiency will do to you.

in52minutes

@holly hobby I'm a dizzy person too! I've had chronic vertigo for about a year and a half now. My blood work always comes back normal, despite doctors initially suggesting that I had some sort of vitamin deficiency. I was recently diagnosed with astigmatism, though, after several eye doctor's appointments where they somehow missed that major problem (it developed very quickly, much later in life than usual - mid-twenties). I'm hoping that finally getting the right prescription for my contacts will fix the vertigo, but for now I'm in diagnosis limbo with and MRI scheduled sometime down the line (while they wait for pre-authorization from the insurance company, which is taking a very long time to receive). I also suffer from depression and anxiety, and my anxiety attacks became severe right around the six-month mark into my vertigo. The vertigo was then written off as a symptom, but as it has continued long after I have been feeling relatively stable, my doctors are finally taking my complaints seriously. And yet, very little has come out of it (crossing my fingers it's just astigmatism).

MarianTheLibrarian

I hope this isn't considered threadjacking/insensitive, but I really want to jump on the dismissive doctors bit. My issue is very minor in comparison to this story, but here it is. Several years ago, I started experiencing intense jaw pain completely out of the blue. I go to my dentist who refers me to a specialist to see if it's TMJ. The guy comes in (I'm sure there were xrays or something like that, but all I remember is him walking in) and asks me about my life. I mention I'm in grad school and he just shuts me down saying I'm stressed about school and that's it. My particular program was mind-numbingly easy and I was not stressed AT ALL about it. I left the appointment in tears because he was so dismissive of my pain and the anxiety I was going through regarding the pain and the fact that I was telling him that school was not the stress-factor here.
tl;dr: there are way to many doctors out there who want to diagnose you so quickly that they have no interest in really listening to you.

Beaks

I have no medical stories to share, but I really enjoyed this.

cupcakecore

So there was also an IHTM article on xoJane today about a woman who had chronic appendicitis that went undiagnosed for an extended period of time. And it fills me with the burning rage of 1000 suns that even now, in this day and age women's illnesses are still dismissed as psychosomatic in spite of numerous physical symptoms. Also this line: "Also, why do so many doctors still inadvertently learn and quote Freud? In what other realm do we still consider 19th century medicine as authority?" AAAAAAUGH. *rageragerage*

And what's worse is when articles like this are posted commenters come out of the woodwork to share their own stories both big and small. I myself had a pretty minor situation where my feelings were initially dismissed by my PCP, but my OBGYN was thankfully more on point. But then how do you even begin to change a culture like this?

ratatat

What are everyone's thoughts on self-diagnosis when it comes to this sort of thing? I was reading something the other day where someone was making a statement about how they felt self-diagnosis is totally acceptable when a doctor can't diagnose you and should be considered just as legitimate as an official diagnosis.

It lead me down a tumblr-hole of "spoonies" and self-diagnosed people and I know it's tumblr so you have to kind of side-eye a lot of stuff on there but I wasn't sure how I felt about it.

dham

On the other hand, I have had a few years of dizziness/fainting/GI issues, and managing my anxiety really did help! Even though I got a lot of "you're a PhD student, it's *just* stress," which is stupid, I also got the more helpful: "Do you feel your symptoms are related to panic? Would you like to speak to a mental health specialist in addition to running these physical tests?"

I essentially am an hysteric, though, which is more embarrassing.

MissMushkila

I think the gender/mental aspect of this is really interesting. My mom had what in retrospect was really bad endometriosis for years. Her male doctor told her the cramps were in her mind. My sister has issues with ovarian cysts that were dismissed by doctors until she had to be taken in for emergency surgery to remove an ovary. I used to (and still rarely) get migraines. All of these were dismissed by male doctors repeatedly, and downplayed or explained as "psychological" issues.

None of them were life-threatening, but all of us had about given up hope of living without pain until we saw a female medical practitioner, and in each of our cases the three different doctors listened to us and were like "shit we are going to take some real action and fix this" -> surgery for my mom and sister, and I finally received specialized medication that allows me to almost never get migraines and treat them immediately when they occur.

I cried in gratitude when I went back to my doctor. Like, sobbed - because no one had taken me seriously, and with very little fanfare and zero doubt she SIGNIFICANTLY improved my quality of life.

bureaucrab

@MissMushkila I didn't touch on that issue in my comment but I just wanted to say that my experience, and that of my women friends and family, is sadly consistent with your story. I don't want to default to being as wary of male docs in the way that the docs in our stories are of us; it's hypocritical to engage in the exact behavior we want them to stop. But this problem is all too common and it needs to be called out and fixed. I just don't know *how* we (society) fix it.

VerityStandingStill

@MissMushkila It's a mixed bag in my experience. I had one female doctor completely dismiss what, in retrospect, were clear signs that I had fibroids. The next year I went to a different (also female) doctor, who alerted me to a problem even without me talking about any of the weird symptoms I'd been experiencing (because I had, since the previous doctor, also dismissed my symptoms). Who knows, if the first doctor had listened to me I might have managed to get treatment earlier, possibly avoiding the expense and inconvenience of surgery.

ETA: I'm still really pissed off at that first doctor.

bureaucrab

GAAAH I have so much to say on this topic I don't know where to start! Many long stories short, I am very familiar with dismissive docs (one of those involving a doctor telling a teenage girl she had no real knee pain and was just jealous of attention her brother got after his knee surgery...yeah, turns out she has severe osteoarthritis). On the other side of things, I work in health policy and have spent a good bit of time rounding with docs in hospitals, and I've seen how young docs get burned in various ways and why they come to be jaded and skittish about believing patients. But it is simply not acceptable to have a medical system that allows that to happen. The system should be set up to drill down from the most common causes of someone's symptoms to less common to rare, and should include integration of physical and mental health to examine and treat the whole person. Giving up, dismissing patients, accusing people of lying, diagnosing mental health conditions when you are not a mental health practitioner - these are unacceptable behaviors and our system needs to get rid of them. People who are suffering should not have to fight just to be heard. And if psychosomatic symptoms really are THAT common these days, then the system should adjust so that mental health needs take a more primary focus in our overall care delivery (psychs as part of GP practices, for example).

I could go on but I'll stop there.

bowtiesarecool

@bureaucrab I agree with absolutely everything you said!

I keep thinking of those flowcharts in the big fat home/family health reference books my parents used to keep around, where you would search for a symptom and then walk yourself through the flowchart (do you have a fever, y/n, do you have trouble breathing, y/n) and eventually land on "take this OTC medication/call your doctor's office/proceed directly to the ER" after including or ruling out a variety of things. Is there a similar diagnostic tool for clinicians? It seems like it would be more useful than just mentally narrowing down the universe of common/rare things that could cause a symptom based on gut feeling. Like, I get zebras vs. horses, but there has to be a more organized way the way it's done now.

bureaucrab

@bowtiesarecool After initially reading this post last night, I wondered the same thing about a diagnostic tool for clinicians. If software like that doesn't already exist, I want to invent it. Like a, not entirely, but sort of, diagnostic TurboTax!

cee
cee

@bureaucrab my doctors - admittedly in the UK's NHS - have definitely used diagnostic flowcharts when dealing with a rare-ish health problem I presented with -- and also the Map of Medicine healthguide system is standard when thinking about treatment options. it seems pretty unlikely that US doctors wouldn't be using similar systems! Maybe they don't like letting patients see that they're using them because it ruins the illusion of doctor-knows-all...

pintje

This was a fascinating read. Did it make anyone else think of Morgellon's Disease, though? They did a 6 year study at the Mayo Clinic and found that the symptoms people (like Joni Mitchell!) were experiencing were psychosomatic. People who claim to suffer from the disease were furious that the study dismissed their pain as "all in their head." I'm not sure why a diagnosis of pain coming from a mental or emotional trigger should be seen as any less "real" as coming from a physical trigger, though.

Lily Rowan

@pintje That's what I was thinking! Debilitating pain caused by anxiety should be treated as aggressively as debilitating pain caused by a broken leg, shouldn't it? Our fucking culture.

bureaucrab

@Lily Rowan "It's JUST anxiety" (or stress or what have you) is the WORST attitude.

cee
cee

@pintje yeah, I was totally reminded of Morgellons - and since I think of M.E. as being a physical ailment, and Morgellons as being significantly more psychosomatic in origin (sorry, Joni), it meant I had to sit and consider how it was I was so definite on this.

damselfish

@pintje The thing that baffles me about Morgellon's is, in finding it to be psychosomatic, that means:

1) You are now closer to treating it because you don't have to chase treatments of "there are weird things growing out of people" (and IIRC Morgellon's is responsive to psych meds? I don't remember if it was anti-anxiety meds specifically).

2) People compulsively scratching at perceived itches is a totally valid symptom in a lot of other mental disorders.

But no instead it was "welp, it's all in your head, the end!" Just because it may be a memetic/culturally bounded appearance of mental disorder/disease doesn't mean you can't treat it.

katzenklavier

I had chronic vag pain for 6 years and went to like 10 doctors, and I can relate so hard to this article. My condition wasn't nearly as debilitating but it was shitty. I got so tired of having to go through the same routine with each doctor, like "No it's not that, I already got tested for that, those antibiotics definitely won't help." I got a few different diagnoses but they didn't have any treatments. I went to female doctors, so I never got told it was all in my head (although I worried that it was), but a few of them apologetically told me that they have tons of patients with the same symptoms but the medical industry doesn't want to invest in a "minor" problem that mostly affects women.

likearollingpin

@katzenklavier Solidarity! I struggled with similar ladyparts-related issues for years, and it was so goddamn infuriating. I felt like I could never get any straight answers and every doctor I visited was too busy for me.

katzenklavier

@likearollingpin A bunch of my friends have had similar problems and never gotten helpful diagnoses either. I was finally cured by baking soda after spending a bunch of money on doctors and useless pills. I'm glad your issues are better now too!

shantasybaby

@likearollingpin Dan Savage (love him or hate him) frequently touts a doctor who's name I forget but her expertise is in vaginal pain. I would try to google it if you were still having issues (I would google it now but I'm at work!)

slutberry

Thank you for this! My mother has had M.E. for over 20 years and gets the hysteria diagnosis ALL the time. It is bullshit.

Myrtle

I'm sympathetic to these women and their suffering. At the same time I'm wondering if the language the women are choosing to use doesn't contribute to the problem. "I basically literally told them I was a Ph.D. Candidate and not to disrespect me" conveys a certain hysteria and inability to frame thought. While my formal education can be described as "guttersnipe," I know when it's time to ditch the sloppy speech. Gender discrimination and risk of medical diagnosis is that time. It's my experience that the removal of modifiers from one's verbal and written communication leaves the message easier to parse. The word "basically" can always improve a sentence by its removal.

Diagnostic Rights@facebook

So pleased to see this discussion! We have joined together to do something about this problem - we are The Coalition for Diagnostic Rights!

We are collecting stories just like these to post in an enormous loop on our site - to show how widespread, and how severe this problem is. 45% of autoimmune disease patients are mistakenly denied care because of reckless diagnosis of "it's all in your head": that's 22 million errors in that group alone.

85% of those with POTS are mistakenly denied care, and women with current active heart attack are 7 times more likely than men to be sent home in error in the under 55 age group. Once discharged they are twice as likely to die.

Please send us your stories, and join The Coalition! Our numbers are our strength!

www.diagnosticrights.org

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