Back in August, I went to a rheumatologist for the first time. Constant lower back pain and early arthritis due to a knee surgery had made me suspect I might have inherited my mother’s psoriatic arthritis. That’s as bad as I ever thought it could be.
That’s why it stunned me when, as I described my symptoms: back and joint pain, inflammation, frequent illnesses, the doctor and his assistants looked concerned. They asked questions that threw me. “Are your eyes sensitive to light? How often do you get sick? How often do you throw up? How depressed are you?”
I was even more surprised when, in addition to checking out my lower back pain, they wanted to test my immune system.
I thought they were checking for psoriatic arthritis; it’s an autoimmune disease that often begins as lower back pain. Some simple tests quickly ruled it out. My doctor had the same concerned, pinched expression that my childhood dog had whenever I scraped my knee. Her facial fur furrowed where eyebrows would be, her ears flattened back, and she’d sniff the wound and make a concerned, chuffing sound, “Fa fa fa fa fa!”
A couple months leading up to my doctors giving me fa-fa-fa-fa looks, I developed what I bitterly called “Fat Fuck Disease.” Even though I dieted so much that I was down to 1,000 calories or fewer a day, I’d been gaining weight exponentially. Turned out it was PCOS, or Polycystic Ovarian Syndrome. Wearing red-rimmed glasses I instantly coveted, my new gynecologist sniffed it out right away. It was a simple solution that made so much sense. No other doctor had even mentioned it. A gastroenterologist once bellowed, “There is NO disease that makes you fatter!” Even I knew of a handful.
Knowing why I was gaining weight and that it had a name finally made doctors listen to me. Apparently there’s a lot to be said for having “PCOS” on your chart, although I was still guarded when I first went to see the rheumatologist, who ordered an MRI right away. If I hadn’t had something so concrete to ask, I never would have gone in at all.
The MRI showed something–but not related to my spine. Enlarged lymph nodes. I didn’t know there WERE any lymph nodes in the lower back, and mine were gigantic. Suspiciously gigantic, like Godzillas. They’d gotten so big that they were hurting me. The doctor’s expression this time was knowing, as if this was what he’d feared all along. He was entering the grief stage of acceptance in my behalf.
I had to see an immunologist asap. Then an oncologist. At Moffitt Cancer Center, my oncologist, who, despite a thick British accent, insisted he had only ever lived in Canada and here. I liked him. More and more blood tests. More and more scans. More and more giant lymph nodes. More concerning blood tests. Acronyms I didn’t understand, but tried to decode with my grad school classes on medical librarianship. Long Latin words I have to call upon my high school and college knowledge of Latin to understand. (Hooray for studying classic English literature?) IgG, IgA, GLILD…..shit. I was terrified.
“It’s either Common Variable Immune Deficiency or lymphoma,” my immunologist said. She was a wise, kind, pretty woman with caring eyes and a spitfire spirit. “But don’t worry. You’re going to be fine. We’re going to figure this out. Please don’t be scared.” She handed me a tissue and touched my shoulder. Even though I trusted her and could tell that her conviction was not simply bravado, it was hard for me to believe.
I started getting sick ten years ago, my Freshman year of college. I woke up one morning with post nasal drip and a slight cough. I felt a little fatigued, like my head had heavy metal balls rolling around inside. The campus clinic doctor said I had “The Crud.” The old man smiled at me and pressed a note into my palm saying I was excused from class for three days. He said it would go away with time. It didn’t.
I eventually decided it must be allergies and started taking Zyrtec every day. But, I never went to the doctor for it again. I only went for the new problems as they arose. Pain. Injuries. Almost constant vomiting. Other gross shit I won’t mention. It went on until last week, when I described my symptoms to the immunologist, who nodded sagely and scribbled out a prescription for a simple antibiotic. Almost the second I tossed the pills into my mouth in a rhythm that has become all too familiar, I started getting better. An infection. I’d had an infection for 10 years.
Are you kidding? Maybe if I had just trusted a doctor wouldn’t write me off, I could have trusted another one enough to mention it. Maybe I hadn’t had to live with this. But I’d stopped going to doctors a long, long time ago. I was just too hurt. Too disturbed by their rude comments. I realize doctors are in a tough spot. That they must have seen dozens—or more—people who were my size or larger who had no interest in changing their lives and who did have weight-related health problems. I get why they thought the way they did about me. But it still hurts. I didn’t want to spend a copay being chided the way I was by one gynecologist. “You’re nearing 300 pounds,” she barked from behind the stirrups. I was already horrified. “When are you gonna change your life?!” I told her all the changes I’d made and everything I’d tried, and she glowered into my vagina. “Yeah, right,” she snarled.
For years, doctors all said the same thing: you’re fat. They saw my pudgy cheeks, my fat arms that made them grab the larger, orange blood pressure cuff disapprovingly, and wrote me off. The body that made nurses glower, confused, at my blood pressure levels. “Your blood pressure is LOW! You’re LUCKY!” They’d shrug. I’d tell them about dizzy spells. Skipped meals. Nearly fainting sometimes when I stood up. Again. “That’s lucky.”
When I saw one doctor for my frequent nausea, the same one who had told me no disease made you gain weight, told me it was good I couldn’t keep anything down, it might finally make me lose some of that weight.
I tried telling them the truth: the weight came after the sickness. I need help. Please, please help me. I’ve tried dieting. I’ve tried exercising. It just gets worse. Please. Please. No. One by one, I was told to fuck off. I’d given up on getting better. I refused to go to the doctor outright, and begrudgingly watched as my partner, Alex, studied to become a doctor. But Alex, bright-eyed and bushy-tailed, tried to figure it out, happily scouring the internet and medical journals, bubbling over with hope and joy, her hand protectively on my thigh. “It could be this! Oh! Or this!” Showing me diagrams of parts of the body I didn’t know I had. She even scrounged up an old CT scan from when she’d dragged me to the hospital years ago after a second sleepless night of stomach pain and vomiting. The lymph nodes had also been big then, but the doctors didn’t mention it to me even though it was in the report. They insisted that the scan showed nothing and sent me home. She came from a family of people with chronic diseases. She was kind. Filing everything wrong a doctor said to me away into a mental “Don’t Do” box for her future patients. Because of watching me and her family members suffer, she’d chosen to take this long, long path so that she could be a safe haven for patients of all types.
In front of her, I was stronger. She didn’t know that every time I went to the store, I scoured the shelves of decongestant with only old women beside me, all of us examining boxes and tossing them into the cart with conviction. This time, this time, it will work. This time, I’ll be lucky. I wonder how much I wasted on decongestant that succeeded only in making me feel a little less like I was drowning in my own phlegm. That’s how it feels, all the time. Coincidentally, my earliest memory is of nearly drowning to death in a pool as a toddler, sinking slowly to the bottom and frantically paddling, the way my dog did, at the water before my mom leapt into the pool at an odd angle and swept me into her arms so tightly I thought she’d never let me go. My great aunt, whose pool I’d fallen into, wrapped me in a towel and clucked “Oh no! You went swimming in your clothes, you silly thing!” I bubbled out water and a laugh at the same time, my little heart racing and my mother glowering at her not to make light of it. My mother held my hand just as protective as she had held my body after the near-drowning as I lay in a hospital bed, preparing for my second biopsy, the one to confirm that I did not have cancer.
Now we were getting buried by bills and still didn’t have a concrete answer. With all the attitude of a fifteen year old, I spat, “They’re going to give up on me. Just like the others. Why wouldn’t they? I’m nothing to them.”
My mom grabbed my hand. “They won’t. I promise. They’ll figure it out.”
I’d gotten lucky. Lucky. Lucky. Lucky. As it happened, a neighbor friend from childhood worked as a Radiology Tech at Moffitt. When I went in for my biopsy, she came and held my hand too. She smiled and promised I’d be okay. When I was in the CT machine, we discovered the buttons on my pants showed up on the CT scan they used to guide the biopsy on my lower back. She offered to climb into the machine and yank my pants off. As she did, she was mortified and wouldn’t stop apologizing, but I didn’t care at all. I was sure she’d seen worse. Her coworkers chided her, “Geez. Usually you take ’em out on a date before you get their PANTS off, Annie!” She was red in the face and promised to buy me dinner next time we hung out.
It took another couple weeks before I finally got the answer. They hadn’t given up. And it wasn’t cancer. Not cancer. NOT. CANCER! I was thrilled, but the thrilled feeling didn’t last too long.
The answer was a condition called Common Variable Immune Deficiency. Yikes. In some ways, it’s better than lymphoma. For one thing, it’s not cancer. For another thing, I get to return to my regular life sooner. But it is a little more insidious in some ways. Treatment won’t stop until a cure is found. I’ll have to have IV infusions regularly and might need to have a port put in since I’m such a hard needle stick and my past passion for donating blood (I’m not allowed to now) have left my good veins scarred. I’ll be at a higher risk for quite a few different types of cancer, all of which I was already at a high risk for since cancer has killed so many people in my family. Any illness will be dangerous to me. I’ll have to miss more work than most people. I might have to work from home so I don’t have to wear masks and constantly pump hand sanitizer bottles until the pump wears a hole in my palm and my skin is cracked and bleeding. And also, because I’ve had it for so long without treatment, I might have developed GLILD.
Granulomatous-Lymphocytic Interstitial Lung Disease. Yikes. I’m out of breath just typing that. I’ll have to have an open lung biopsy in a couple months after I start treatment. If you don’t know what that is, unfortunately, it’s exactly what it sounds like. As you can imagine, it’s hard for me to deal with. I’m only 28, and I suffered from serious depression for so long it feels like I only just started being alive. I’m the type that hates taking medication, too. I’m not even terribly fond of things like alcohol. I don’t like “messing” with my brain and body. I can deal with the medication since I know it’s necessary, but still. I’m scared. My parents are scared. Sometimes, I hear Alex cry or sniffle as she studies things like lymph nodes and lungs, picturing my disease growing inside me while I suffer.
Primary Immune Deficiencies like CVID do get one cool thing: we get to call ourselves zebras. Like many rare diseases, our mascot is a zebra, which comes from an old saying in the medical field: when you hear hoofbeats, think horses, not zebras. Meaning check for common illnesses, horses, first, before rare ones, zebras. We got all my horses out of the way, and now, I can show my stripes.
Most of all, though, I’m angry. I was turned away by doctors so often because of my weight. My anger felt directionless. But then, I realized there were so many other people out there like me. People who don’t have my incredible support network of friends and family, don’t have Annies and Alexes telling them the right questions to ask. Don’t have an understanding of medical information like I have thanks to my educational background in medical libraries and living with someone who is in med school. Who didn’t have a friend who happened to work at Moffitt. Who were just as confused and scared but didn’t have the strength or money to fight this. I realize I have to help somehow. I’m not sure where to start, so as a first step, I’m writing this. I’ll try to find places to donate to and any possible way I can help. I’m just so, so grateful that I get to live. I keep reminding myself of that. I get to live. There are happier, healthier days ahead. I get to live. I get to live. I’m lucky. Now, I get to think about those who aren’t.