*Note: This post is referencing experiences from a few months ago, I just haven’t had the courage to post it until now. That said, I think the experiences, reflections and frustrations of navigating doctors’ offices are still worth sharing.*

Chronic pain. Chronic illness. These are words I’d never considered using about myself until recently. Together, they sound scary. Separately, they make sense.

Pain: when my gut cramps 30 minutes after eating anything on some days, on the worst days after drinking water. When my entire digestive system aches the way lungs do after a bout of coughing. When I drag myself to work with two heat packs, sit at my desk, and tuck them inside my waistband to get through the day.

Chronic: when this has been happening on and off, but certainly getting worse, for 5 years. When what started as a typical travel bug didn’t just go away. When food poisoning, stress, too much food, not enough food, are enough to trigger symptoms. When the symptoms disappear for a while – sometimes for months at a time – but always seem to come back. When I realize that in the three cities I’ve lived and worked in, I’d told few of my friends and fewer of my co-workers, because it was so normal.

Illness: when the doctors can’t or won’t tell you what’s wrong. When I finally have health insurance that’s actually good – not just emergency care! – and the doctor’s only diagnosis is IBS, code for “we believe you’re in pain, but we have no idea what’s wrong.” When I finally get a diagnosis after becoming my own advocate, always insisting on making yet another appointment. When I get antibiotics, realize I’ve been misdiagnosed, and watch as the drugs make everything worse. Much, much worse.

***

I walked into the doctor’s office in a daze. My stomach was hurting, pain dull and sharp all at once. My head felt foggy, and it was hard to think. I’m fairly certain I had a fever.

“Is your pain livable?”

I’d been on a strict elimination diet for 6 weeks to quell an antibiotics-triggered bout of stomach issues, after taking antibiotics to supposedly fix said stomach issues. The diet had worked some weeks, and made little difference during others. And on top of it all, I now had the flu, or at least a bad cold.

My only response to that question was disbelief. That has to be on the list of questions to never ask a patient. Unless I’m in the ER for an immediately life-threatening issue, then yes – my pain is livable. I’m alive. I’m here.

“Sorry, I meant – is your pain tolerable?”

As I ball my hands into fists, I slowly realize that I haven’t been performing sick correctly. I’m used to hiding trauma the queer Lankan way, the way immigrants of color learn – smile broadly, hold your body in just the right position, don’t let your pain make anyone else uncomfortable. Place a hand where it hurts, but be careful not to grimace too much. If the pain really gets to you, just laugh.

I’m read as a small, brown, South Asian woman. White men often assume that I can’t tolerate much pain; I need to be “visibly” hurting to be taken seriously.

But here’s the thing – after 5 years of chronic stomach issues, pain is often a daily occurrence, a normal part of life. My pain tolerance at this point has reached impressive levels – if I performed pain the way my doctor expects every time my stomach triggered, I wouldn’t be able to get through a week. But that doesn’t make my pain unreal. Am I not allowed to desire a life free from consistent pain?

“Well, you don’t look sick.”

My expectations should be lower by now, but I was expecting some actual medical advice.

I was led into the doctor’s office by a nurse. She weighed me, and I was surprised by the number. I asked her if she could check my weight from my previous visit. I had lost 10% of my body weight in two months, and 6 pounds since my last visit 6 weeks ago. These numbers are written in the file that my doctor is holding open, yet he doesn’t seem concerned.

What, exactly, does looking sick mean, for queer brown people? Are you expecting the smile to come off my face, my body to cave in on itself, to be doubled over or collapsing on your office floor?

Do you not understand that I “look sick” now, holding my pain with shallow breath, carefully placed hands, a slightly fixed smile? What would it take for a queer, brown, woman to “look sick”?

“Were you trying to lose weight? If you keep losing weight, I’ll start to get concerned.”

If I were a tall, broad-shouldered, white man, I bet my symptoms would be taken seriously. Losing 1-2 lbs a week for over two months would be a cause for concern, not merely something that all women secretly desire.

I would be expected to tolerate pain, to calmly articulate the process of my digestive system falling apart. The lack of hysterics would be expected, perhaps even lauded.

Instead, I’m sitting in this office, with growing anger, watching as my symptoms get dismissed. Learning that I’m not presenting as sick enough, in pain enough, for the doctor to believe that my body is in serious crisis.

“If you’re really sick, we’ll know. You’ll have a fever, you’ll be in a lot of pain – we’ll know.”

Except, that’s exactly what’s happening in this office. Right now. I’m sitting there holding my gut to keep it together, with what feels like a low grade hazy fever, calmly describing the symptoms I’m experiencing to a doctor who clearly doubts that I even need his help.

I don’t register or perform pain in the way you expect. I’m used to performing beyond and through the constant ins and outs of being sick. But that doesn’t mean I want this to be my normal.

“Why don’t we wait and see how you’re doing in another month, and see if you need to come back.”

I left the doctor’s office full of rage, with a promise that I would never go back.

***

I don’t know what it would take for a doctor to recognize and treat pain in my gendered and racialized body. I don’t know how to get taken seriously, as someone read as a queer brown woman.

I don’t know how to explain to the doctor that this isn’t surprising – that almost every queer and trans* person of color that I know has an issue with their body, is fighting to stop their bodies from falling apart. The trauma of family rejection, structural violence, a never-ending cycle of grief that none of us can escape, where we mourn bodies every week, sometimes our own – that pain becomes physical, leaves us broken in ways that we can barely articulate.

It’s been a few months now.

I’m not in this moment of crisis anymore – I stopped listening to my doctor, stopped taking drugs that put me in an endless cycle of treating symptoms. I don’t feel like my gut is trying to eat itself every day. I’m back to “normal,” where my gut is unpredictable and I’m sometimes in pain, but at least I have the skills and the know-how to cope.

Yet I also have a deep distrust of the “healing” that comes from a doctor’s office. After 5 years of failing to get adequate treatment, of consistently having to be my own advocate, of having my pain written off and dismissed, of getting misdiagnoses and the wrong drugs – I’m not quite sure how to “heal.”

I don’t know what it will take for us to get whole, collectively. I don’t know how to support and hold the never-ending cycles of grief and sickness that seem to rock our communities every other week. It won’t happen in this doctor’s office, that’s for sure. But I need to believe that it will happen, can happen, somehow.