Living with an Undiagnosed Illness: Jamie’s Story

Editor’s Note by Brendan McDonald: What happens when you feel sick all the time, but doctors can’t find anything wrong? In Undiagnosed, Jamie Reese Zimmerman shares the harrowing reality of living with undiagnosed illness—when every blood test comes back normal, every specialist shrugs, and yet your body won’t let you live in peace. This is the story of chronic illness with no diagnosis, invisible symptoms that fracture relationships, and the emotional toll of being sick and not believed. From navigating work with chronic illness to learning how to cope alone in a medical system that too often fails women, Zimmerman's essay is a lifeline for anyone trapped in the messy middle of uncertainty, still searching for answers—and solidarity.

It was a normal day the first time I got sick. So normal that I don’t remember it. The sun was surely shining, the California sky without a spec of clouds. With Covid seemingly still a sneeze away, along with coming out of two years unexposed to the usual load of people, I figured my immune system was simply a bit rusty and that getting sick was normal. People told me it was normal. Doctors told me it was normal. And so, I decided it was normal, and I was normal too. Then I wrote it off as a box of leftovers from covid season and went on with my life.

The first time I got sick, I had headaches, body aches, exhaustion, weakness, and vomiting. I was sick for fourteen days.

The first time I noticed something was wrong with my gut wasn’t so normal. I remember the weather. It was exactly as I described above. I remember the day. It was a Tuesday. I remember where I was. I was in my hallway between the living room and the bathroom.

I remember the pain gutting me like a fish. A cutting. But there was no blood. No proof of my pain. Nothing to paint my doctor’s note with.

I remember gently placing myself on the floor, like an heirloom Christmas bulb you mustn’t shatter. I remember sweeping my knees toward my chest as the world around me went black, then waking up on my floor, possibly minutes later, I can’t be sure. I remember that day not just because of the pain and the awakening as a lump on the ground and the rays of sunlight peeking through my door’s little square window welcoming me back to life, but also because it was a landmark day. After that, my stomach never functioned the same again.

I’d start a new relationship soon after that. One where instead of cuddling at night I’d have to lay my body down in the most “just right” position, so I wasn’t in pain while I slept. I remember the man I was with being understanding at first. But at first faded as it does. And eventually, my inability to be restful in a way that made him feel important wore on him.

During my time with this man there wasn’t a day my stomach felt comfortable, but I learned to not talk about it unless it was approaching what felt like the danger zone. He didn’t tell me not to talk about it. I chose not to talk about it. I saw how it affected him when he knew I was in pain. How it stole the air from this throat at first, and how it frustrated him later when he’d forget I was in pain or forget to care because his needs weren’t being met.

The thing is this man wasn’t unkind. He simply was a human not in chronic pain. He just didn’t get it. The relationship didn’t work out for many reasons. To say my health wasn’t a factor would be foolish. However, I will say, as someone who he had to come “rescue” multiple times, once while I was traveling across the country by myself, where he actually had to hop in a plane to get me because I was so sick that I was scared for my safety. And knowing the way sickness 2 not only weighs on the ill but also their loved ones, he did as well as any person could do who had his own bag of issues clawing at him (that he wasn’t dealing with).

Since the gut pain started, my body changed. My once flat tummy took the shape of the swell of a bad sprain. Bloating wasn’t an occasion; it was my everyday dress code. Soon, I couldn’t fit into any of my pants, and so I bought new pants. Baggy pants that fit about as well as my diminishing confidence. I went to the doctor's only to be told “it sounds like stress” and “It’s probably IBS, eat more fiber.” I ate more fiber. I removed as many stress triggers as I could. I meditated. I did yoga. Nothing changed. I learned to live with the discomfort. I told myself I was beautiful despite my body’s changes. I told my body I loved it, even though I felt like it hated me. And I went on with my life.

But going on with my life would only last about three weeks to a month at a time. Starting in January of 2023, I started to get sick once a month (at least that’s when I started tracking, it may have started earlier). For a minimum of ten days per month, the headaches, body aches, vomiting, and exhaustion would return. On a good month, I’d have 22 healthy days. On a bad month, I’d have 12.

While this was always inconvenient, because I worked freelance when this started and was finishing graduate school, I had the flexibility in my schedule to figure things out workwise. I’d get subs for my yoga classes. I’d spend an entire day on a healthy day working on newsletters. I’d binge write essays, and then, when the sickness came, and it always did, I would retire into my bedroom under my soft pink covers with nothing to do but heal until it was over. Not an ideal situation, but it worked.

It wasn’t until I finished graduate school and got my first job in the field of my new degree that making it work became implausible. Two days before I started my 40-plus hours a week job, I got sick again, delaying my start date a full week.

When I finally started my job, I was giddy like a kid at a carnival who just won a prize. There was electricity in every step I took that first day. My whole body seemed to smile. From head to toe I felt it. I had made it. I was there in this new role, doing a job I had worked for years to be qualified to do. And I didn’t just believe I could do great things; I knew I could. I knew I could do great things for the company, for my resume, for my future, right there in that building.

My office had floor-to-ceiling arch windows, and I had floor-to-ceiling-sized dreams. Two weeks went by, and I felt in the flow. Rolling my shoulders down my back as I walked into the building, leading with my heart, using all the parts of my brain I pride myself in being good with, but also very quietly hoping to God I wouldn’t get sick again. Two and a half weeks went by, and I started to feel a tiredness. The kind of tiredness that didn’t feel normal. The kind of tiredness I had grown accustomed to the past six months. The kind of tiredness that sinks its teeth into my flesh and snaps its jaw shut right before I get sick. My arms and legs felt like barbells. My eyelids like trap doors, too heavy to open after they shut. After two days of tiredness, I was sick 3 for 10 days.

I have been to four doctors in the last month. I will be seeing a fifth doctor next month. I have had blood tests, an MRI, a late-night visit to the Emergency Room, and no answers. I have been prescribed medications for migraines and nausea and I’m still sick. I have heard, “You look normal to me” from a doctor. 

I have felt unbelieved, uncomfortable, and unwell in every sense of the word. And I have gone to every appointment alone. It took only a month for me to realize alone wouldn’t work. I didn’t feel strong enough to do all these hard things by myself. But as a single woman with a family who lives basically an entire country away and doctor appointments at the same time my friends work, alone in the common sense of the word was my only option. I had to go with a plan b. An inventive un-alone.

I started to pretend my mother was there holding my thirty-six-year-old hand at each appointment. I’d bring her with me. I’d close my eyes, take a deep breath, and feel her weave her fingers into mine. It’s still the only way, at this point, I can advocate for myself without my tears choking out my words. The essence of my mom holds my shaky hand, and I tell the doctors as much as I can, and I fight when I need to fight, and I re-word and try again when I get thought- tied.

I don’t have answers yet. I can’t tell my work my health restrictions or anticipate when I’ll be better because I don’t know what is wrong with me. I can’t guarantee those giddy knowings I had gazing out my office window will come true, even though a little piece of me still believes they will. I can, however, choose un-alone despite the fact that I am and will in the common sense of the word remain alone; alone scheduling the doctors’ appointments, alone documenting my symptoms, alone attending my doctors’ appointments, alone getting my doctors’ notes for work, alone holding my hair back when the toilet is the necessary device to lean into. 

But also, I am not alone. I am doing this with everyone else who is in the messy middle of illness or disability who knows what it feels like to sit in a lobby with a blinking ceiling light in which you can’t understand why they won’t fix it, waiting for your name to be called. 

To all of you who have been here or will be here or are in a very similar position at this exact moment. If you don’t have a person to conjure in your mind’s eye to hold your hand, you do now. I’m here.

Imagine my hand. It’s small and my fingers are what I like to call chubby. My nails are short and painted brown and there’s an off-center heart tattoo the size of a quarter on my right wrist. My palms are warm and full of the sweetness of a melt-into-me hug. I am holding your hand, and I won’t let go until you are ready for me to do so.