science of us

‘Being Believed Is Everything’: What It’s Like Living With a Controversial Diagnosis

In her new memoir, Sick, the novelist Porochista Khakpour recounts her wide-ranging, nearly lifelong health problems. Now 40 years old, Khakpour admits her fascination with illness began early, as a teenager, when she fainted at home after a hot shower. Of this early episode, she writes, “I felt more peaceful than I had in ages … I felt special as a fainter, as if I was a character from another world. It felt like an event to have a condition.”

Khakpour’s symptoms, as described in the book, are unending and various, hard-to-place and sometimes self-inflicted. (“I hate to exercise, I hate to meditate, I don’t enjoy eating well, I never get proper sleep … In some ways, I keep myself sick,” she writes.) She receives several diagnoses over the course of the book, which is structured somewhat chronologically, but more by sense of place: Los Angeles, where she grew up (and where, she suspects, the air pollution and mold contamination shaped the health issues to come); New York, where she lives and works; and Santa Fe, where she convalesces, and where her current medical team is based. Early encounters with doctors resulted most often in psychiatric diagnoses; Khakpour eventually spent a short time in a psych ward because, she says, it seemed like the only option she had left to receive medical attention.

In 2012, a friend of Khakpour’s suggested she might want to look into Lyme disease, and referred her to an infectious-disease doctor he knew in Malibu. Khakpour writes that the doctor seemed “immediately convinced” she had the condition. He ran a few tests (to the tune of $2,500), and sent them to IGeneX, a testing lab specializing in Lyme which was subject to an investigation on unconfirmed positive results in 2005. As her doctor expected, Khakpour’s results came back positive.

Chronic Lyme, also called late-stage Lyme, which Khakpour is eventually diagnosed with, is controversial, unsupported by the CDC and NIH. To some extent, Khakpour acknowledges and grapples with the question of believability; it’s clear her parents’ patience with her wavers, and certain doctors refuse to treat her. Still, Khakpour has found incredible support from online communities, and has raised nearly $40,000 for her medical treatments via crowdsourcing thus far. After suffering a recent relapse, Khakpour returned to Santa Fe for treatments, and she was there when I spoke to her over the phone about her book, chronic Lyme, and her desire to be believed.

I saw on Twitter that you’ve been feeling unwell recently – can you tell me about your most recent bout of health problems?

I had a major, major, major, major Lyme relapse last winter. It seems like I had some sort of mold exposure, possibly in my parents’ new place in Glendale, California, which is also an area where, historically, I’ve really struggled with the air quality. Winter tends to be when I have bad Lyme relapses. I had been traveling a lot, I had a relationship fall apart. It was kind of a crazy time. And I started having the worst symptoms.

I’m coming back to New York for my book launch, and I’m going to stay with my old editor. I still haven’t had it together to sort out everything pertaining to my apartment in Harlem. [Earlier this year] the apartment above me and next door to me went through major demolition with this corrupt management company in my building. It looked like they were trying to flip spaces really quickly. The people that were doing it didn’t have papers. There were no signs put up, and the smoke alarms started going off from the dust in the air. And, you know, there’s lead, and all sorts of stuff, because it’s a 150-year-old building. It just destroyed me, and it resulted in me having to stay with random friends around the city. It was just me and my dog. I already had no energy, and then going from place to place was devastating. They’ve cleaned up some of the mold [in the apartment building], but it’s something that I’m very sensitive to.

Is mold something where, because you’ve reacted badly to it in the past, it’s always going to be a trigger? It obviously doesn’t affect every person the same way.  

My understanding is that it really depends on where your immune system is at. I’ve probably lived in several moldy places, but my initial exposure to toxic mold was in 2011 in Germany. Who knows when I got Lyme along the way, and how that factored in there. Lyme usually needs a trigger to really go off.

What makes it so hard to pinpoint that Lyme exposure?

There are people that test positive for Lyme and never really show the symptoms that I have. There’s a whole algorithm — your exposure to toxins, post-traumatic stress, the rest of your health profile, your hormones, lifestyle. Doctors have to put all those things together. Hopefully you have a doctor you can trust, like I do here in New Mexico, who can tell me why this happened and what the way out is.

When you say your health deteriorated, what does that mean? What are the symptoms that pop up?

I have very low blood pressure, so I have to drink salt water most of the day. I have an often very rapid heart rate, or tachycardia, which I treat with magnesium, because I don’t want to take stronger drugs. Then I have — gosh, so many things. I have really bad anemia this year again, which could have something to do with the lead. So I’ve had to try to correct that. I’ve had the most disturbed sleep you can imagine, so I’m working on that. I’m basically sleeping every other night. And then dysphagia [difficulty swallowing] is a really big one. So for me, I have to really intense lymphatic problems, and it often settles right into my throat, and I have trouble swallowing. I have gum recession. Gums are where Lyme loves to hang out and hide. There’s a lot of stuff. My body is far from in good shape.

What are you doing to treat that now, out in Santa Fe?

I’m going through some really intense detox right now. I’m taking cholestyramine, for instance, and chlorella — all these binders to pull out mold, Lyme, God knows whatever else I have in my bloodstream. That’s part of why I feel so bad. I’ve been in detox-treatment mode every day for a week.

It seems like that also might also contribute to other people’s confusion about what’s really wrong with you, because they look at these treatments and say well, obviously that’s what’s making you feel bad.

Yeah, it’s going to catch up with you, most likely. I have inflammation, and we know I definitely have Lyme, and we know I’ve been exposed to mold. And as a New Yorker, I think I burned the stick at both ends for years, since I moved back in 2013. So part of it is not just dealing with this, but also dealing with years of acting the part of being someone who’s super healthy. Exercise, for chronically ill people, can trigger inflammation. And this past winter I was going back to really strong yoga, and running, and doing infrared workouts, and trying to be part of health culture so I wouldn’t be depressed. But overexercising and too much cardio are big triggers for illness. So go figure, right?

At several points in the book you seemed resigned to the impossibility of a clear diagnosis. How much has getting that diagnosis changed things for you, if at all?  

On the one hand, it’s been great, because I’ve gotten to know what is wrong with me. For years doctors said, “Oh, you’re an anxious, hysterical woman,” and they put me on benzos, which really derailed my life. I think it is helpful to know what it is. I have an ability now to not get too attached to it. I don’t like being one of those illness people who overidentify with illness. Not that there’s anything wrong with that, but I actually think it makes it a little bit more challenging to get well if that’s your only identifier. I’m pretty noncommittal about all my identifiers in a way, because I’ve always been fearful of being pigeonholed. But at the same time, illness and disability communities have been a godsend for me, especially online.

What does the online Lyme community look like?

It’s changed over the last decade. It used to be just message boards and weird forums and things like that. I actually found a lot of those to be harmful. I just found them to be full of conspiracy theories. They can be a real rabbit hole, and lead to lots of misinformation. I have good doctors, I don’t need too much of that.

Twitter has been really, really amazing. Even Instagram and Facebook. It’s just another way to reach out to other people — some who have Lyme, and some don’t. A lot of these issues have incredible overlap. Anyone who suffers from an autoimmune disorder can relate to a ton of my symptoms, even though I no longer test positive for that.

A lot of my friendships with writers and chronically ill people come from being online. That has been to me a gift. It’s the only reason why I don’t disable it completely, because otherwise it’s not great for my health.

What is it like to be in a relationship with a chronic illness, with a partner who doesn’t have it?  

In the book I concentrated on the relationships that were very difficult, with what you could call toxic men. I felt like that was an important way to talk about trauma and PTSD, too, because in the wrong hands, sick people will just get more sick. It can operate just like being exposed to mold. There’s definitely a cautionary tale that I wanted to get out there.

When people met me during remission, they would just love being with me, and saw me as so strong, and I would always say, “I have Lyme, I could relapse any time. Sometimes I need to take it slow.” And they’d be like “Oh yeah, that’s fine,” and the minute the relapse would come, they would be out. This happened to me this winter, it’s happened to me many, many, many times in my life — more than what you see in my book.

I don’t even have a great answer for what it’s like to be in a relationship as a chronically ill person because I haven’t had the fortune of having too many great partners who could handle the complications of my illness. The advice is always, like, “Wait till you’re better to meet someone.” I feel completely differently about this right now. I might even announce this on the book tour. I want someone to meet me when I’m this ill. I want someone to see me pale, and my hair falling out, and sometimes walking with a cane, or in a wheelchair. I want them to see this person first. I’ve always been into transparency, but I’m big on it more than ever now. I haven’t shaved my legs in months, I haven’t been able to wear nail polish or lipstick — all those things have been too toxic for me in this kind of moment of chemical sensitivity. It’s like, if you Google me, I look different, and I was dying my hair different colors, but that’s okay. I’m not that person now, and I might never be that person again.

One of the bigger things you grapple with in the book are these confusing and sometimes misapplied diagnoses, and there are a few places where you’re essentially diagnosing yourself — you mention, for instance, lying to your book editor and saying you had chronic fatigue, just to sort of get her off your back about a deadline on your first novel. Do you think that undermines your story? How important is it to you to be believed?

Well, I should say, too, that fibromyalgia and chronic fatigue are diagnoses that I’ve casually gotten at different points. It’s funny, because I sort of thought I was lying, but I was so pre-Lyme journey, I didn’t know there was probably truth to it. A lot of people think chronic fatigue and fibromyalgia, just like MS and ALS, might actually be Lyme. There’s a tremendous amount of overlap.

It’s clear, I think, to everybody, that Lyme was what I had, in retrospect. So being believed is really everything, but you have to get to the point where you believe it yourself. That involves proper diagnosis and proper doctors looking at the data and facing what’s going on.

Do you think there’s a gendered component to that belief?

Absolutely. I think people just never, ever, ever, ever want to believe women. It takes so much for women to be heard. You have to employ so many strategies — are you going to sound professional, what are you going to wear. The pressure put on women in just presenting themselves to an ER or a doctor is tremendous. No one should have to go through that. I think that part of the tragedy of my book is being stuck in a world of men and heteropatriarchy, whether it’s the medical system or the boyfriends. Part of that was just me needing that affirmation from everybody. I was flailing.

I don’t really care as much now what men think or how they might regard me. I still have problems every time I see a new doctor or specialist. Maybe now I have the privilege that they can look me up and know certain things. But it’s one of the saddest things. Someone asked me recently why do more women have Lyme. I think it’s clear it takes women a lot longer to be diagnosed, and it takes women a lot longer to be treated. Doctors focus on my hormones, or focus on the fact that I’m not married, or never had children. I have to often steer them back to things like Lyme.

It’s interesting to me that you mention your privilege, despite having twice now needed to crowdsource  some of your medical costs.

My privilege is that I could have a GoFundMe up or a YouCaring up, and people actually know me, and give money. So that was really heartening. I’ve been lucky to have a platform where people could reach out to me and help me just as I’ve tried to reach out and help others.

How much have you been able to raise using those platforms?

In 2012, it was about $15,000. And this time it’s been $22,000 or so. Which, if you ask people with Lyme is like nothing, really. The average cost of late-stage Lyme is deep six figures, usually. And that’s how much of my own money I’ve paid over the years. It’s kind of crazy to look at numbers that large and still think, “God, how will I even do this?” But I’m so grateful for it. I would have been dead without the support of all my communities, even those who can’t pay.

This interview has been edited and condensed for clarity.

Porochista Khakpour on Living With Chronic Lyme