A medical student was isolated by an autoimmune disorder. Poetry was a way out

When Leena Danawala’s poetry was published in JAMA last month, the medical journal became just about the only place online to publicly showcase her art.

Danawala, a 34-year-old rheumatologist in the Chicago area, had been writing poetry for over a decade but only posted about it occasionally on her Instagram. During her two-year rheumatology fellowship at Ohio State University, she suddenly felt the urge to share.  

“There were a lot of people who had the same disease I had. And when I talked to them about it, they were so relieved to hear that there was somebody who got through medical school and still came out the other side and is still doing OK,” she told STAT. 

Danawala’s condition, a form of small vessel vasculitis called granulomatosis with polyangiitis, was diagnosed when she was in her early 20s. Through poetry, she can see the wider view: the illness “made me into like a new person, forged a new life.”

STAT spoke to Danawala about her JAMA poem, “chronicity,” the process of getting medical answers, and forming a new identity. This interview has been edited for clarity and brevity.

When did you write “chronicity” and what inspired it?

I wrote this like a year ago, while I was thinking about my journey. It felt like a very long hallway that’s never going to end, because they couldn’t diagnose me at first. For two years I was having these symptoms and they didn’t really know what it was, and none of the treatments were working. And that’s also why my parents turned to all alternative pathways.

I think doing that made them feel better, so that’s why I did it. A lot of times they’d be like, “Well, let’s go see this priest, and you do this puja,” which is like a ceremony, like a prayer to god. I did a ton of those. Or some priest would read my horoscope, the Indian version of it. It’s hard for me to really believe in that, to be honest. But there’s also no harm in fulfilling your parents’ requests. So that’s why I put some of those things in there.

You wrote, “being ill is being alone.” Can you talk about that feeling?

I don’t know if it’s necessarily all Indians, but definitely a lot of people from India don’t really tell anyone besides close family about illnesses. And it might be something found in other cultures as well. I think part of it is, especially when you’re a woman, marriageability. And then part of it is just you don’t want someone else knowing the family’s business or judging you for an illness. Or it’s a fear of losing opportunities.

So when I first took my time off from medical school, I didn’t even tell any of my friends why I was taking time off. A lot of my friends were very confused, and I lost touch with a lot of them. I really only have, like, two friends left from medical school because of that. 

And at that time, too, I think it was just hard to find other people with similar symptoms as me. 

Your condition is an invisible illness, too. 

The only thing that was visible was I had uveitis. My left eye was constantly, completely red — very noticeably red. So that was the only thing that was visible besides me not looking like I was feeling good, like I had the flu or something. It was pretty isolating in that sense. 

That’s when I picked up poetry again, mainly because that was the only outlet. Poetry became a little bit like journaling for me.

You didn’t want to take leave from medical school. What caused you to make that decision?

I basically went to class, went home and went to sleep. To maintain my grades in medical school, I cut out a lot of social activities. I just stopped hanging out with people because I didn’t have the energy. There came a time when I had to take a board exam after two years of medical school. I was studying for that and I just couldn’t do it — you should be studying like eight hours a day for 4 to 6 weeks. And that determines what residency you can get into. I decided, because I couldn’t do it, I didn’t want to ruin my chances of my future career. 

Initially, when I took the time off, I thought it was only going to be three months. It ended up being almost two and a half years because my doctors couldn’t really figure out what was going on. I went through treatment after treatment and none of it was working.

How did you get a diagnosis? 

We were sick of it after a year of going from doctor to doctor and no one really giving us any answers, so we asked to go to the Mayo Clinic. They were the ones to diagnose me. They’re the ones that did all the biopsies and did further imaging and retested some of the bloodwork. There are certain antibodies that are positive in this disease, and so those antibodies were retested and they were positive. 

They were already hearing about the new medication, so they were like, “We should just start you on it.”  Once I started on rituximab, it was kind of life-changing. So many things improved pretty quickly after that. 

I know I said your poetry was difficult to Google, but I did find out that in 2013, you won first place in a poetry contest hosted by a public library. And it was in that time frame of when you were getting a diagnosis.

Being at home all day was kind of depressing. And so I would just go to the library and read or draw or write, stay there for a few hours and come home.

I went through all the stages of grief during that time. There’s just a lot of loss. The hardest part of getting a diagnosis is a loss of your sense of self — who you were as a person is no longer the same. And you have to be OK with building a new person. Who I was before was very athletic, I was involved in a gazillion things at once, obviously had a lot of hobbies, a lot of social obligations. I had to cut down a lot of those things, and it made me very frustrated and also really angry that I couldn’t do the same things, angry at the limitations that I now had. It felt very much like a little box I’d put myself in. 

I had to re-identify who I was, and then how I could reintegrate some of the things that made me me, not at the cost of my health. 

The final line in “chronicity” says, “perhaps someday god will tell me i am fine.” It made me think of an experience many people with chronic illness share: the difficulty of being in an in-between space — something is off and maybe you don’t know exactly what, and you might sometimes feel broken but you don’t want to be treated as if you’re broken. Can you walk me through that final line?

I think it is what you were mentioning. I say I’m in remission right now because generally my condition is well controlled. But there’s good days and bad days. There’s days where I thought I was going to be OK, and then by the end of the day I’m completely unable to do anything. So even though I’m technically better, I don’t think I’m necessarily at the 100% that a normal person my age would be at. I’m always, constantly trying to find ways to be fine. It’s very much a balance between pretending you’re OK and then letting yourself not be OK. 

When I wrote that line, it just seemed to fit. That’s what I think when I do anything religious in relation to my disease process, which is that at some point maybe the good will be greater than the bad, or I won’t have to take medication anymore, or something like that. And then I won’t have to do all the prayers.

“Living With” explores the contours of life with chronic illness, from the prelude to diagnosis to new patterns of living, to wrestling with big questions about illness and health.

Want to share your story of living with a chronic illness? Email [email protected].

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.