"I never allowed anyone to get close to me, romantic or otherwise."

When I was 11, I was diagnosed with chronic osteomyelitis, an ongoing and reoccurring infection of the bone. It typically strikes one area, and for me, that was my jaw. Somehow, I developed an infection in my jaw bone, even though statistically, that should have been impossible.

Growing up, I saw dozens of doctors; if there was a cure, they didn’t know it. They weren’t even sure how it happened, or when, or why. I was otherwise healthy, and never experienced any kind of facial injury or trauma. The only educated guess anyone could come up with was a visit to the dentist and bad luck.

For more stories about women living with Invisible Illnesses, check out our new series Life Interrupted: Living With an Invisible Illness.

By the time I was 13, I had taken three different kinds of antibiotics and had undergone two biopsies. Out of sheer desperation, my parents took me to Los Angeles to see a famous Russian mystic known for her healing powers.

“You have an illness,” the mystic immediately whispered to my mom in Russian. We had schlepped all the way from San Diego and stood in line for hours in what I remembered to be a hotel banquet hall reserved for weddings and Bat Mitzvahs.

“And you will never find a husband,” the Russian woman added, using her powers to deduct that I was hetero and wanted to get married. She offered magical rocks to store in our house, which she pronounced cursed, and ultimately the reason why misfortune had fallen upon on me. They cost $1,000.

“Let’s go,” my dad told us.

Throughout high school, the chronic pain sharpened and the inflammation spread, the latter which I expertly hid by asking for layered haircuts and side bangs that cloaked the swollen parts of my face I was ashamed of. I never told anyone about my jaw, or the pain, its lifespan infinite and punishing. In photos, I always tilted my head to the right, or made a goofy peace sign with my hand that covered half my face. I never wore my hair up.

The thing about paying attention, I learned, was that nobody really did. Think about it: When was the last time you really focused on someone’s face and took in the details? We see what we more or less expect, and nobody expected a teenage girl to have a swollen jaw every day.

After the mystic, I saw an orthodox Jewish healer. I had a homeopathic doctor tell me I need to start eating cage-free eggs. I tried arnica and Chinese medicine. I did acupuncture. By my early 20s, I grew more reserved and resentful, pessimistic and tired. I was about to graduate college, and the pain had grown worse. The swelling would go up and down, and there seemed to be no rhyme or reason behind it.

Because of the many painkillers I was taking, I couldn’t drink. I slowly stopped going to parties. I sporadically dated, not taking any relationship very seriously, but desperately wanting to. I couldn’t bear the thought of a guy discovering how broken I was. I wondered, constantly, if what the Russian witch said was true.

Credit: Gina Vaynshtey

It wasn’t. I met my now-husband, the sous chef at a restaurant at which we both worked during my last year in college. The flirting led to dating and the dating led to moving in together, and the moving in together led to the anxiety of being discovered. I never allowed anyone to get close to me, romantic or otherwise. I was afraid of what would happen when a person liked me enough to actually pay attention to my body.

If he noticed, he never said anything. I eventually opened up about my jaw during a date, around six months into our relationship. We were taking a walk, and the throbbing had intensified so much, I had to lie down in my car. After about an hour of me sprawled in the backseat waiting for the Tylenol and ibuprofen to kick in, I told him about the osteomyelitis, the doctors, the Russian mystic.

“I am so sorry,” he said, rubbing my temples.

After about a year of intensified pain that became no match for my over-the-counter pills, my parents and I found an oral surgeon who suggested a more aggressive surgery. “Like a carpet bomb,” he explained to us. The plan was for him to saw off the glitched bone.

It took an entire summer, which I luckily had off as a grad student, to heal—and it was hell. For the first few weeks, I was unable to shower by myself. My jaw was so swollen, I couldn’t speak, I couldn’t eat solid food, I couldn’t (and didn’t want to) leave the house for three months. I lost 15 pounds. My husband pureed food for me like he would a baby. Every day, he and my dad took turns dropping me off at physical therapy, where I basically learned how to talk again.

A year went by until I could look into the mirror and not want to cry. The surgery had knocked back the pain, but not completely. The ache was still there, and so were my painkillers that I carried in a small bottle that rattled in my purse like a shrill maraca.

Throughout everything, the pain, the surgery, and then back to the pain again, I wondered if I was holding my husband back. So much of his life revolved around fixing me. He could tell when I was struggling, calling my mix of pills “the cocktail” and helping me take them without me asking. If he saw me curled up in bed rubbing my jaw, he dimmed the light, or he filled up a baggie with ice.

Sometimes we canceled date night because the pain was deafening. Sometimes I was so sad and so self-absorbed with my stupid jaw, I forgot about sex, about showing affection, or even just being appreciative.

My frustration turned into surliness. I felt like I was being high-maintenance, a burden that nobody signed up for. All of the above is still true. So how could a person want to spend the rest of their life with someone so marred, so defected?

I’m still working on it, but I realized I couldn’t keep thinking like this and treating myself this way. Chronic pain is deeply rooted in my identity, and it’s helped carve who I am. It has both softened and hardened me. I’m a person who has chronic pain, but I’m also a writer, an editor, a manager, a daughter, and a wife to someone who never once saw me as damaged.

As I was writing this, my husband said something that's stuck with me: "It wasn't an option, not being with you. I love you, and 'you' aren't your jaw pain, 'you' are the woman I want to spend everyday with because you're smart, funny, and beautiful in all the different kinds of ways."

While I don’t totally buy into the “everything happens for a reason” mentality, I do think that my husband and I are who we are as a pair because of my struggle with pain. Would I have it any other way? Duh, I’d trade my pain in a heartbeat.

But since I can’t, I learn to manage it, and not let it swallow my ambitions or my self-confidence. Every step of the way, my husband is there for me, making sure I don’t lose sight of my goals. We are a united front. I don’t think a relationship could be sturdier than that.

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