I Don't Know How To Talk About My Chronic Pain

Each time I came home I was a further diminished version of myself.

Yesterday was the anniversary of my brother's death. Almost ten years ago, when he was eighteen and I was sixteen, he passed away in a car accident.

Yesterday was the anniversary of my brother's death – and for the first time in all of these years, I wasn't able to mourn him, to think about him, to remember him because of the level of physical pain I was in.

My chronic pain has become so debilitating that it consumes every part of my life – taking away not just my physical but also mental and emotional freedoms.

I've always been a writer, and I've always been an introvert. While many people like discussing their problems with friends and family, I prefer to deal with my problems on my own. Knowing that my friends and family are there if I do need them has always been enough for me. But for the first time I'm dealing with a problem that never goes away – if I isolate myself to deal with it like usual, then eventually, I'll end up all alone.

Most of my friends don't even know I'm sick. And most of my friends who know I'm sick don't know how sick I am. And most of my friends who know how sick I am don't know how I continue to get even worse every day.

Right after my 21st birthday, in December of 2011, I experienced my first symptom. I walked downstairs into my parents' living room early in the morning, white-faced, hand clutching my chest, and told my mom, "I think I'm having a heart attack."

I didn't know how else to explain the sharp bursts of stabbing pain in my chest. We rushed to the urgent care, where the doctors ran a battery of tests and assured me there was nothing life-threatening happening. What I didn't understand at the time is that life-threatening and life-ruining are not synonymous.

I was a junior at the University of Georgia then. In the beginning, my symptoms were frustrating but secondary to my life. I still went to classes, still partied, still worked. But each month existing symptoms became worse and new symptoms appeared, and each month, doctor after doctor told me, "You're very sick, but I don't know what this is."

The summer before I left for graduate school in 2013, a rheumatologist finally diagnosed me with Fibromyalgia. At the time, I was relieved. Ecstatic, even. I Googled it. My illness wasn't going to kill me. Morgan Freeman had it, and he was Morgan Fucking Freeman. Everything would be fine. At that point, despite my still worsening symptoms, I mentally decided to put my health out of my thoughts and head to NYC to get my MFA in Creative Writing at the New School.

I loved NYC. I had always wanted to live there, and I was finally doing it, and not just doing it but doing it with a community of fellow writers. Over my two years in the city, I interned at literary agencies and publishing houses, I made great friends, I completed my first novel and found an amazing agent for it.

But over those two years, I also became more and more sick. I was in denial. I would come home every few months for vacation and the requisite doctor appointments, and my parents would notice the differences – how each time I had less stamina, was in more pain, had new symptoms. Each time I came home I was a further diminished version of myself. In the back of my mind, I knew things were getting bad, but I didn't want to admit it – I was living in NYC! I wrote a book! I was graduating!

When my parents flew up for my graduation, they could tell I was in bad shape, and they urged me to move back home. In my state of denial, I thought they were being like all parents – they just wanted me back in Georgia so that I could live close to them. I didn't realize they were telling me to move back home because they could see how sick I was.

I signed a new lease anyways. Moved into my new apartment anyways. Applied for jobs anyways. Kept pushing anyways.

It was only a couple months after graduation, when I came back to my apartment in tears and collapsed onto my bed because I was in so much pain and so exhausted from walking the short four blocks to my grocery store and back that I realized how disabled I was.

Disabled. I still feel disoriented applying the word to myself. It still feels so foreign. But that's what I am: disabled.

That day I called my parents, told them I was coming home. In just a few days I booked a flight, found a subleaser, packed up a suitcase, and headed back to Atlanta.

But even then I was still in denial. I found a month-to-month subleaser, told myself I'd be back in the city by winter at the very latest. I was going home on a mission: to find out what was really wrong with me. It couldn't be Fibromyalgia. It didn't make sense. I was so sick and getting worse and worse not by the month now but by the week and then eventually by the day.

Now I've been back home for almost a year. I've seen countless doctors. Been in and out of the hospital. Have had batteries of tests done – blood drawn until the bruises on my inner arms became almost permanent. And still, I'm where I started years ago, doctors still saying, "You're very sick, but I don't know what this is."

I started painkillers a couple months ago – a low dose, once a day to help me fall asleep. I don't want to be on painkillers, but over the years I've tried everything else to help the pain: acupuncture, physical therapy, yoga, chiropractic care, gluten free diet, etc. Nothing worked. Most things made me worse. I hate that the pills just try and mask symptoms instead of fix anything, but even the most alternative holistic doctors I've met say that sleep is most important, that I have to take the pills.

I can no longer adjust, which is what I've been doing for so many years. By the end of undergraduate college, wearing bras had become painful, so I bought ones with less constrictive straps. Then those became painful, so I switched to wearing tank tops under shirts. Then those became painful, so I had to find shirts and dresses I could wear without undergarments at all.

I know. It sounds like such a silly problem, but when you're twenty-five and a woman and stare into your closet and realize you can only wear a few of the many items and that even those few items will first irritate and then painfully affect your body after a couple of hours, it doesn't seem silly anymore. It seems like a nightmare.

And it is a nightmare. My nightmare.

For most of the day, I'm trapped alone in my room because clothing is too painful to wear.

There, I said it. That's half the reason I can't go to that concert in Atlanta or have to cancel our one-hour lunch plans – because the simple act of putting on a cotton dress triggers so much mind-numbing pain that I instinctively yelp when the stabbing pains strike and startle whoever is driving me around.

How do you talk about that? How do I talk about that?

When friends from high school ask why I'm back in Georgia and how I am, it's too tempting to just say, "I'm okay! Just subleasing my apartment in NYC for a bit. How are you?"

Instead of, "I'm disabled. Living in an endless cycle of chronic pain. Exerting all the effort I can to just make a trip to the pharmacy or go see a movie, just to get out of the house for a few hours, then come back home to unspeakable pain that batters me until about ten at night, when I finally take a pill that only alleviates enough pain for me to type these words for a few minutes and then shut my eyes."

When friends wished me happy birthday last December and asked how I was, it was too tempting to just say, "Thank you! I'm great!"

Instead of, "Thank you! I've barely been able to eat for weeks and have lost fifteen pounds because there's something wrong with my stomach." And then weeks later. "Yes, I did end up in the hospital for three days. Upon discharging me, the doctors said, 'You're very sick, but we don't know what it is.'"

When recently, friends congratulate me on my book deal and ask how I am, it's too tempting to just say, "Thank you! I'm great!"

Instead of, "Thank you! The pain in my hands is so severe and overwhelming and the pain in my chest when I sit up stabs with such ferocity, I can almost only work on my writing late at night in short intervals, after I've taken narcotics and before I go to sleep."

Each day I get more sick. Each day doctors, the few who haven't given up on me, still don't know the cause.

I apologize if this essay has been rambling. I kept waiting to write about my experience until I was healed, until I had perspective on it all. I've had countless fantasies about writing a novel about a sick and undiagnosed character who finally finds the miracle answer and recovers.

But this isn't one of my novels. This is my life. And as of this moment, it's more statistically realistic that I'll continue to get worse not better.

A few months ago, when I landed in the ER for the first time, the nurse said she was going to give me IV morphine. I'd never had morphine before. I was in so much pain. I asked, "Can you please put it in now?"

She said, "I already did."

So I'm in it now.

This is my perspective.