Living With Lyme

What it’s like to be sick when no one believes you.

Stock image of a waiting room.

On this week’s episode of my podcast, I Have to Ask, I spoke to Porochista Khakpour, a novelist and writer whose new book is Sick: A Memoir. Khakpour, a 40-year-old Iranian-American writer, has struggled with health issues for much of her life. She begins the book by saying she has “never felt comfortable” in her own body, often feeling that something was wrong it; she had more serious symptoms—lethargy and dizziness, joint and muscle pain, as well as serious psychological symptoms, including insomnia—as she got older. Khakpour was eventually diagnosed as having late-stage Lyme disease. Below is an edited excerpt from the show. In it, we discuss why it took her so long to get diagnosed, why people with Lyme disease—especially women—are often doubted when they report their symptoms, and why people have so much trouble talking to, and understanding, their friends or relatives who are living with illness.

You can find links to every episode here; the entire audio interview is below. Please subscribe to I Have to Ask wherever you get your podcasts.

Isaac Chotiner: Where are you today and how are you feeling?

Porochista Khakpour: I’m here in a studio in Glendale, California, which is kind of funny. It’s where my parents have been living and where I last got really sick due to some mold in their place, but also air quality. It’s 3 p.m. in Southern California with extreme heat and bad air quality. It’s just like one of the worst things someone with my condition can do, but I am learning to go back to the way I was for years and sort of play nice with my disabilities, and sort of endure it instead of letting my body go into a complete panic.

What’s your earliest memory of feeling uncomfortable in your own body?

My whole childhood here in the Pasadena area where I grew up, I had these really, really intense convulsions at night and it was something that I never really told anyone about. I kind of talk about it as “tremors” because I knew that term from all the earthquakes we were having when I was really young. I felt that sense of unwellness. I didn’t know myself if it was anxiety or what, but I was almost always not sleeping. We were pretty recent refugees from Iran, and so I sort of just accepted that panic and anxiety and sadness were part of my condition.

By the time I was in my early teens, I fainted and had near-fainting episodes pretty regularly. We went to a GP here in the ‘80s in L.A. who was very blasé about it all. They found out I had mitral valve prolapse. They didn’t really make any connections to trauma or the mold that was very visible in the little apartment that I grew up in, in a bad side of town in Pasadena. They didn’t really look further. Also, at that point I remember my parents would tell the doctor that they fed me a very American diet which they thought was good, which was a lot of fast food for a lot of my early years.

Two hot dogs from Weinerschnitzel was my dinner, and soda. That was seen as good. Occasionally if my mother had time, she made a Persian meal, but they were really struggling. They had no money. They were trying to figure out America. They didn’t have perfect language skills, so I don’t really blame anyone, but they were very, very hard circumstances.

When did you first sense that you may have had some serious disease, and when did you first start trying to seek out a diagnosis?

In the summer of 2006, it was just shortly after I had gotten a book deal for my first novel. I was very excited. It was the first time that I had gotten a chunk of money that, you know, wasn’t a lot but it was more than I ever knew and I was really excited. I got to L.A. and within a few days, I lost my ability to sleep entirely. I had, like I said, some insomnia my whole life but this was very weird. I actually couldn’t remember how to sleep.

Within a few days, other symptoms started showing up so then there we are at some doctor’s offices. I had some gastritis. All sorts of things were popping up and people were just like, are you stressed? I was like of course. Are you depressed? Sure. Are you anxious? You know, all those things I could say yes to. I ended up following them on a fully psychiatric route. All the doctors were like, “We’ve got to fix your sleep first.” I was put on a lot of really strong hypnotic sedatives and benzodiazepines to control my sleep. They tried me out on lots of antidepressants and things like that. I just deteriorated more and more and more. I came back to L.A. in June, but by October I was many, many pounds lighter. I could barely speak, I could barely move. Yeah.

You said you didn’t remember how to sleep. Can you describe what you mean by that in practice?

I still remember that first night when I went to bed and I was clearly having some major neurological problem, but I actually didn’t know how it worked. I knew I could shut my eyes and have like a glass of chamomile tea and try to fall asleep like I normally did. I couldn’t access it. I didn’t know if you fall back into sleep, fall forward into sleep I didn’t know how it worked. That, I had never really experienced in my life.

Eventually you are diagnosed with late-stage Lyme disease. Why is it such a complicated disease, and why is there so much debate in the medical community about it?

The first time I got diagnosed with it was three years later and who knows, it might have been from 2006, but we had sort of not looked into Lyme when 2006 happened. In 2009, I was back on my feet a little bit and teaching in rural Pennsylvania. My boyfriend and I had gone to sort of a mini summer vacation to Mexico. We came back, he had five mosquito bites, I had 83. He was from Connecticut and he thought one of my bites looked suspect. He sort of saw it as a bullseye rash and said, “You know, maybe we should go to the ER.” I thought that was ridiculous. I was a California person. I didn’t know much about ticks or anything. I had been sort of new to hiking and camping and all that. When we went to the ER in Pennsylvania they took it pretty seriously but they didn’t think, they weren’t sure, they ran the sort of basic test and I don’t remember if it came out positive or not. It was sort of dismissed and they said just in case, you should take a couple of weeks of doxycycline and then we’ll do some more tests and results will come.

A few months later, we did find out that I tested positive for Lyme and I was put on a couple of months of antibiotics. I even had like Lyme arthritis. I couldn’t walk up a flight of stairs. An infectious disease doctor we were seeing, called Dr. E in the book, kind of told me don’t go chasing this too far. You’ve had other things like Parvo. You probably treated the Lyme, it’s probably fine. He was interested in my whole history but he wanted to set some limits on it. I got off the antibiotics and I actually started having a lot of symptoms in the next few months which I did not connect to Lyme.

I had severe anxiety, panic disorder, all sorts of stuff at a time in my life where I was really, otherwise, very happy. OK, like, still we’re thinking Lyme’s been treated, I don’t have Lyme and then flash to 2011 and 2012 where I had my most acute health plunge. I was a fellow in Germany and on the plane ride there, I literally had an abscess on my head from a pilar cyst that had burst, which we again did not connect to anything that had to do with my immune system. I spent some months teaching there and I started having these really weird collapses on the streets of Leipzig, which we couldn’t tell—are they seizures? Are they sort of diabetic shock? I had blood-sugar issues, I had everything. No one could tell what it was. I was hospitalized in an endocrinology ward in the hospital in Leipzig, and they could not figure it out.

It took another six months of us being in California and me going to therapists, I mean, every GP on the planet doing autoimmune tests. It was just an insane run around until we got to a doctor in Malibu who was dealing specifically with Lyme and he ran tests at IGeneX Labs, which is the premier Lyme lab in the country. Everything Lyme. There’s controversy, but I found out through that that I had pretty unequivocal Lyme and CDC-recognized Lyme.

Why is it such a controversial, contested thing?

Because you’ve got the CDC and the FDA, which have never been very cooperative with the recognition of the disease, not to mention the treatments. There are mainstream treatments in Germany that they don’t do here, that they look at like they’re crazy. In Germany, people have been doing them for quite a while, and they work. I go to lots of places that seem a little bit off-the-grid in the U.S. to get treatment because just conventional antibiotic therapy, while it did help, is not enough for my system. So much research was halted, because, yes, there was a vaccine at one point and anti-vaxxers said that gave them migraines or whatever, so that went away. Not to mention there were a lot of conspiracy theories around it.

How much do you attribute your various health problems to Lyme disease? How much do you attribute it to other things and the bad luck of someone who was born having these health issues also picking up Lyme?

I think I’m actually very lucky. That’s how I see it because if I didn’t have access to, say, crowdfunding … I’ve never had a lot of money, but I just had enough that I could pursue getting better. With someone like me—where doctors will look at bloodwork every time and something pretty intense comes up every time—for me to be sitting here at the studio with you, and being able to speak, that’s a lucky person in my opinion, because I could have been dead many, many, many years ago. I came very close many, many times. Even though I’m frustrated by all these years of doctors, I’m even frustrated now with my best doctors, and something is going too slow, or them trying things out on me that doesn’t work. It’s a mess. It’s very hard to treat, but on the whole, I really see myself as lucky.

You write in the book, “It was the first time that it occurred to me that wealthy people had such options, how with money you could actually take a stab at life no matter how bad the odds.”

With the treatments for Lyme, they’re thousands and thousands of dollars. Most people hear that this costs me over $140,000. That’s a pretty conservative estimate. It’s probably closer now to $200,000 or more. Who knows? It’s extremely expensive. I mean, in the first place, to have done those IGeneX tests that I did in 2012, at that point, the various tests they did came out to be $4,500. Most people including myself normally would never have that sort of money. There could be so many more people than we know who are sick with Lyme.

You write, “The deal with so many chronic illnesses is that most people won’t want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything will be okay. None of these are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind.”

Can you talk about what being sick and viewing people through the lens of how they dealt with your illness is like?

I mean, it’s brutal. It’s something I’m still living right now in this Lyme relapse moment too, because friends say I’m very thin right now, and everybody keeps saying I look great, or that, “Don’t worry, you’re not that thin.” I’m like, “Wow, I’ve lost 20 pounds pretty recently. Like, I lost 10 pounds in one week.” I don’t think this is something to applaud. I feel uncomfortable in my body. As I said, my mother is with me here, but it took a long time for her to recognize me as someone that was sick. My own father still thinks it’s overblown.

This is the dilemma of being human, right? We don’t really know how it feels inside anyone else’s head. As humans, I was going to say as Americans, but I think this goes further than that, we’re not very good at listening to people. We’re very good at airing what we have to say, but we’re not the best listeners. We don’t always want to believe someone. When someone says, “I don’t feel well,” they’re like, “Oh come on, be positive,” or “Oh sure you do.” They don’t want to hear that. You have two choices. Fake it until you make it, which can only go so far if you’re sick, or just to really become crushed by that. My depression and anxiety had everything to do with people not believing me. The pain of the illness was bad enough, but the worse part was just not being heard.

In the book, you write, “When my mother admitted she saw me as sick, I cried for hours. She thought she had done something wrong, but I let her know it was the opposite. To be seen, to be heard, to exist wholly, whether in beauty or ugliness, by a parent often felt like another big step to wellness.” I sense your mother is probably in the room right now, but—

No, she’s outside. She’s having water and stuff in the other room.

I’m curious what she thought of the book.

Well actually, my parents and I have an agreement for them not to read it. They’ve dealt with years of seeing and reading my essays online, so it doesn’t surprise them that I write about them in ways that they sometimes don’t love, but acknowledge that it’s true. I just thought this isn’t a book really for them. They won’t be surprised by anything in the book. We’ve all discussed that to a very exhaustive extent, but this is really for others. This wasn’t even a book I really wanted to write. This was, for me, something that people asked of me. I felt, “OK, I have to write this then, because people need this book.” That’s that. They’re definitely not reading it, but they’re seeing the press about it.

I know you’re somewhat active online. What has being someone dealing with sickness as the internet rose—and I’ve read about people finding communities on the internet, people who share the same illness, the same sickness—what has that been like for you? Has it been a help in certain ways?

Yeah, it’s funny. Today, I was thinking, “God, I really wish I could just block out a lot of Twitter.” At the same time, as someone who has always been really informed, I love Twitter, and I love to know about what’s going on in the news. But I’ve had to step back from some of it, because I’ve also been an activist for much of my life, but recently, I felt like it’s really been killing me. I’ve had to step away from that. However, it’s also where a lot of sick people are. I mean, if you think about it this way, a lot of us were literally lying on beds and looking, scrolling, because we just can’t do much else.

We can’t go to work always, or we can’t even create. I mean, sometimes, I have been really mentally messed up. I somehow can tweet, but I can’t really write sentences. I’ve talked to different friends of mine about this, and they have the same experience, so we don’t really know why. I connect with sick people all the time. It was them who said to me, “You know, you’ve written these other things, and you have a gift with words. Why don’t you write about your journey?” I was like, “Huh? No, I don’t want to.”

I never even suspected to be an essayist. I thought of myself as having two modes that were like journalist and novelist, and then things like teacher and activist, but I was quite hesitant. Then I wrote the book. What’s been interesting is that I was for months in dread of touring, and I just did not want to do it. I didn’t even want to hear a passage from the book. I didn’t want to think about it. It was such a painful experience writing it, but the experience of actually reading from it and meeting people, and doing some of the touring has been actually really heartening and really beautiful to me. A lot of those people online that I’ve known for years I’ve met in person, and some of them come to these readings in huge pain, and it’s expensive.

I’ve met people that have taken very long trips to see me, and people with brain cancer, and people with all sorts of the overlapping diagnoses that you find in this book. That’s been amazing for me.

I don’t know. Sorry, it’s really emotional for me.

My last question was going to be how the book tour had been for you and as part of this whole experience. And it sounds like in many ways, it’s been wonderful, which I’m really glad about.

It’s been amazing. I keep thinking no one’s going to show up. Talk about the mind and body connection. This doesn’t heal us, but at least lets me feel some degree of peace knowing that there are others there. That was really one of my big goals with this book: that we could just all feel a little less alone. There are no solutions in the book. I don’t have a solution for my illness. I don’t know what literally tomorrow is going to look like much less a month later or a few years later. The last interview I did, I did it on a stretcher in New York City in an ER room. You don’t know. But what’s beautiful is this time that you can spend with others when, I think, we’re so lonely in our culture. That’s been really nice for me.