talkgroup

[salon.com] Mystery illnesses are on the rise with women, whom doctors are dismissing as "nervous Nellies"


The Lady’s Handbook For Her Mysterious Illness by Sarah Ramey (Doubleday/Julius Schlosburg)

Mystery illnesses are on the rise with women, whom doctors are dismissing as “nervous Nellies”

“The Lady’s Handbook for Her Mysterious Illness” author on the only recourse for ailing women who are being ignored


469

7

MARY ELIZABETH WILLIAMS
APRIL 7, 2020 8:30PM (UTC)

This conversation has been edited and condensed for clarity.

Until recently, being catapulted into a health crisis was typically a solitary affair. Even if you had the privilege of great support and help, you still got sick on your own. You searched for a treatment plan on your own. You kept all the other plates in your life spinning on your own. Now, of course, we’re all a facing catastrophic illness together, learning what it feels like when the ground gives way under our feet. Which is why we can learn a few things from those who’ve been there.

“The prologue is typical of women like me,” author and musician Sarah Ramey writes in her new memoir. “A simple and innocuous medical event — often with a gyro or gastro tilt — that should have resolved simply, but didn’t.” For years after a seemingly minor infection and procedure for it, Ramey was living inside the identity of a chronically ill woman — one for whom doctors had no answers, except that perhaps her symptoms were psychological in their roots.

The Lady’s Handbook for Her Mysterious Illness” is Ramey’s account of her quest for answers in a healthcare system that is often antagonistic to patients, especially female ones. She chronicles the wearying toll of pain and the frustration of trying to get a test deemed “an indulgence.” And she also explores the meteoric rise in “unnamed” conditions that affect millions of women — searching for causes and possible solutions. Salon spoke to Ramey recently about her decade-long odyssey, and her hopes for the post-pandemic healthcare landscape.

Tell me about how you became a full-time patient.

The way it began with me was with a botched surgery that set off two major problems. One was a mechanical problem from the botching of the surgery. The other was the true mystery part of it: being extremely tired, muscles aching all the time, digestive system shutting down. I had been completely healthy and really active prior to this, and then all of a sudden just extremely sick for no clear reason.

Advertisement:

My parents are both physicians, so for the first year I was ferried around to the best possible minds to evaluate what was going on. “Why is she in so much pain? Why is she sick all the time?” In the beginning, everybody took it quite seriously. A lot of them knew me. They knew that I was a normal, active young lady, and all of a sudden I was very sick. Of course, something had to be very wrong.

But as they ran all the tests and looked for everything any smart physician could think of and everything came back negative, a new diagnosis started to emerge. One urologist who had just performed this really horrible procedure took me into his office with my parents. Instead of talking to me, he looks at my parents and says, “You know, this test was negative. What I really think is going on here, like so many other young women her age, is this problem is psychological.”

That was the first time that that happened. Then that would happen hundreds of times after that. In the absence of being able to understand what was going on, it became everyone’s easiest way to think about it – it must be some sort of psychosomatic issue. This is extremely common; I would say default. It’s not that women come in and are always dismissed out of hand. It’s that when the tests come back negative, then the default — in my experience and the hundreds of women that I’ve interviewed — is, “If we can’t figure it out with the tests that we have available, then it must be psychological.”

This started for me in 2003. I was completely unaware that was a phenomenon. I really trusted medicine. I really felt very safe in the medical world. But then about two years into it I met somebody like me. I call people like us WOMIs — “a woman with a mysterious illness.”

She was telling me the story of her experience in the medical world, and it was a carbon copy of mine. I felt like, this is a miracle. After that, I started to meet so many women. The symptoms are not always the same. But the story is exactly the same. Once they’re not able to figure it out — and usually it’s in the same family of neuroendocrine immune problems — then the assumption is that it’s psychosomatic.

There’s a phrase you use — “the marginalization of mystery illness.” It becomes, "We can’t figure it out, so you’re wrong. The disappointment is not on us, it’s on you."

Yes. And this is such a strange moment to be talking about anything wrong with medicine or with doctors, because right now doctors are doing the thing that we all love and revere and respect about doctors. I really appreciate everything that doctors do. But there are some real problems in the system that I do think have to do with the unconscious biases a lot of physicians have towards, probably any marginalized person, but definitely women. I think both men and women, male and female physicians, learn that women are these nervous Nellies. It’s important to understand that’s a problem in the psyche of the physician; it’s not a problem in the psyche of the patient. The power dynamic is so unbalanced. That’s a really difficult position to be in, because you don’t have the ability to make them not think that and make them treat you appropriately and make them fund the study of your disease.

The inherent patriarchal nature of medicine is certainly not new. Our American healthcare system was designed to treat male patients. The male body is the default. Yet now there is this explosion of women reporting similar symptoms. It is very much a younger female issue. What do you think is at the root of that?

The first thing is that nobody can say because so little research has been put into studying those problems. They don’t get studied as physiologic, biomedical problems. There’s no data. That’s why they’re mysterious. It’s not because they are impossible to understand; it’s because they haven’t been studied almost at all.

I do think of the people that have been looking at this and have been taking this seriously for a long time, there are two camps that have a lot of overlap. Personally, I think the best theory is that we’ve made a lot of changes to our everyday lives. We have really changed our diets. We take so many antibiotics and then eat a diet that inherently imbalances our microbiome. We know that has real neuro inflammatory effects. It can inflame what’s called the microglia, which is part of the central nervous system. They think that is part of what is driving some of these neuro and endocrine problems in people like me. But it’s complicated.

It’s sort of the opposite of a virus that comes in out of nowhere. It’s instead what happens when you really disrupt the foundations of everyday, like when you disrupt the diet and how much you move around and how much social connection you have and how much you sleep. All things that we think of as soft and unimportant or whatever, actually really do have cumulative effects.

I talk about something called functional medicine. Functional medicine really talks about how we’ve changed our diet, the amount that we move around, our social connection, these things that really have an impact. Also the amount of chemicals that we use in an everyday way, and in an acute way.

Over the course of time, it does appear these things that we’ve changed measurably, radically in the last 60, 70 years are having an effect on our health. We can see it clearly with obesity, diabetes, heart disease, the metabolic diseases. That’s much more visible. But over on what I would call the neuroendocrine immune branch of the chronic illness tree that we’re growing — autoimmunity, all these gut problems, irritable bowel, endocrine problems, endometriosis, polycystic ovary syndrome, and all of the neuro inflammatory problems like chronic fatigue syndrome, fibromyalgia — those I think are also growing out into the same underlying problem of disrupting the microbiome, of changing the diet, etc.

These neuroendocrine immune problems, one theory is that it has so much to do with how all these things are stressing the body. And one major difference between the male body and the female body is the stress response. It’s different. The female stress response is more sensitive to some of these more subtle changes in the environment, probably having to do with, if you’re the body that has to carry new life into the world, you need to be sensitive to the environment around you. That’s one theory about this, and you can’t brush it all off because it’s going to affect this super fragile, new life in your body. The theory is that the female is sort of the canary in the coal mine here that’s responding to all of these changes that we’ve made.

The problem is because the female is responding first and we don’t study or particularly care about the female response, that it’s just being ignored. It’s allowing this huge problem to balloon. It’s going completely unstudied and and dismissed, even though there are so many people that are suffering and dealing with all of these problems.

It’s very clear that just in the past couple of years a community has arisen over these symptoms. Yet there is a lot of false information out there, a lot of misinformation, a lot of snake oil. There is hope for the medical community, but in the meantime, what would you say to women who are experiencing these mysterious illnesses?

This is a very imperfect suggestion, but there is almost no help for people like this in conventional medicine. You will just be treated really poorly if you try to go from doctor to doctor to doctor waiting for someone to take you seriously and help you. I wish it wasn’t true, but that really is true. So what happens is you have to defect outside of conventional medicine into quote, “alternative medicine,” which is just a jungle. [There are] so many different modalities, and everyone telling you that they can cure you and help you and heal you. So what I always recommend to people is at least starting with and reading about functional medicine.

The reason is that I think functional medicine is the group of practitioners in alternative medicine who have shifted through all the bulls**t, and have left the most evidence based and the most clinically evident things that people are seeing are working for the largest number of people. It’s like a filter for all of the nonsense. It’s not a perfect filter, but it’s one filter. Functional medicine practitioners, I think, are offering currently some of the best therapies. Just as a baseline, they are going to look at what’s going on in your gut, which I personally think is very important. They are going to help use what’s available to modulate the gut microbiome, which is a diet and sometimes herbs and things like that.

It may be in a couple of years that conventional medicine is just going to give you a fecal transplant and that’s it. But right now we don’t have that. So you have some of these more quote “alternative” ways of manipulating the gut microbe, That’s why I would start with functional medicine. If you have really severe chronic fatigue syndrome or really severe mystery illness or really severe Lyme, there are some centers like the Center for Complex Diseases, the Bateman Horne Center. Stanford has a myalgic encephalomyelitis, which is the other name for chronic fatigue syndrome, [initiative]. Those are also worth looking at.

It’s just that there are millions of us. That’s why I don’t usually recommend like specific centers. Functional medicine is more widely available.The problem is you can’t guarantee the quality of a functional medicine doctor. You don’t know if they’re going to be a Yahoo or not. I do think that this is like the best of a really imperfect, cobbled together system that is doing its best to try to help people like us. But it’s better than being told that you’re crazy and it’s better than saying, “Oh you’re severely ill. Let me just put some crystals on your forehead and I’ll give you some lavender oil.” That just drives me crazy, when somebody is really sick and somebody that’s gone to a training over the weekend is advertising that they can help you. The reason I suggest functional medicine is, I think out of all of it, it’s doing the best to sift through the wheat from the chaff.

What is it like for someone like you right now living through this pandemic? There is an increasingly large population of people who are going to get this virus. We certainly see here in New York city that the people who are becoming infected and becoming very sick are young. Surprisingly young. I am curious what it feels like to you and to the people that you’ve been talking to, watching this, and what you’re doing to cope.

I am going to give you an honest answer here, which is that I think everybody in this community and people like me feels very similarly to everybody else. This is a catastrophe of unimaginable proportions in every direction. And it’s just horrifying. A lot of people in the chronic illness community are doing wonderful things to help other people cope with being homebound suddenly and learning to live the way that we’ve done for a long time. I really admire that. But I feel that it is very difficult.

When I was homebound or bedridden for long periods of time, there were a lot of people in my life who said me, “You are so lucky. I wish I could work from home. It’s just so hard being out in the world and being so busy all of the time. Lucky you.” Or when I when I wasn’t able to work, people would just say, “Oh, you’ll find something. It’s fine. Just look on the bright side. Everything will be fine.”

To watch so many people struggling with being homebound, watching their job go up in smoke, suddenly feeling on the the brink of economic ruin and watching the government not doing enough, not having enough tests, having no tests, all of these things are the things that people in my community have been suffering with for decades, and being told that we’re making it up, that it’s just a hallucination. It’s wild to watch suddenly everyone having almost a carbon copy experience of how horrifying it is. It’s just what everybody is describing, as a tsunami that’s genuinely threatening to sweep your whole life away, and how horrifying that is.

I hope this shared experience of how bad that actually is can open up, after all of this is done, a better conversation about the lives of people in my community that have been dealing with a lot of these same components for a really long time. And maybe allow people to be a little bit more empathetic and helpful as we move forward.

MARY ELIZABETH WILLIAMS

Mary Elizabeth Williams is a staff writer for Salon and author of “A Series of Catastrophes & Miracles.”

MORE FROM MARY ELIZABETH WILLIAMSFOLLOW EMBEEDUB