After a year and a half of talking with one doctor after another, it was Dr. W, a rheumatologist, who explained my mystery illness.

“It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. UCTD,” he told us.

My husband and I had no idea what that meant except for one thing. My gut instinct told me that not knowing those letters, not immediately recognizing the name Undifferentiated Connective Tissue Disease, was a good thing. If UCTD was truly bad, it would have been a familiar term. A term you hear about a lot in relation to walk-a-thons and fundraisers. Multiple sclerosis. Muscular dystrophy. Even if I didn’t know the specifics of those illnesses, I knew their names. I knew they were complicated. UCTD sounded okay.

“It’s not fatal,” Dr. W said when I asked him outright. Our son was three years old at the time. It couldn’t be fatal.

We finally had an answer, we had prescriptions to fill, and a follow-up appointment in two months. I thought we were done. I thought UCTD was the final answer and life would certainly get better.

The whole diagnostic process made me think of a complex algebraic equation. I had liked algebra. I liked being presented with a long line of numbers and variables and operations to perform. I liked showing my work, line by line, with each successive line becoming shorter. Until finally I reached the end, and could write x = 2.5. A nice, neat answer. That was exactly what I was hoping for when we walked out of Dr. W’s office with a set of letters I had no frame of reference for, but eventually would understand how to solve this equation too.

In hindsight I realize Dr. W didn’t tell us everything we needed to know. He didn’t tell my husband and me that being given the name of my illness wasn’t the end. He didn’t send me out of his office—his office full of textbooks, many written by him, and framed accolades and diplomas — with any sort of guidance and direction for what happens next.

He should have told me to find a therapist. That it would benefit me to prioritize my mental health. He should have warned me that my diagnosis would prove to be completely life-changing. He should have told me that having a name to call my pain doesn’t make the pain go away. That it doesn’t make the pain any easier to live with.

Initially, I just felt a heaping serving of relief. The mystery pain in my left leg now had a name. For about a year and a half I had told doctors my left calf felt hard and tight as if stuck in a perpetual muscle cramp. I told doctors my left leg felt heavy, as though I wore weights strapped around my leg. My left leg hurt, a lingering, throbbing pain as if I had walked into the side of an open car door. Having a diagnosis meant it wasn’t in my head. I wasn’t exaggerating my symptoms. It was all real. Finally, I received validation. No more half-hearted suggestions from different healthcare providers to elevate my legs or try wearing compression stockings.

Except, the relief from validation didn’t last. Because an autoimmune disease, specifically a not-well-known autoimmune disease, is just as hard to handle whether it has a name or not. Because my symptoms don’t work in a neat, cause-and-effect pattern. Because some of the doctors and healthcare providers I have met with over the years — neurologists, hematologist, physical therapists — have never heard of UCTD.

It’s been more than ten years since I first heard that acronym. More than a decade living with an invisible disability that would make it necessary for me to retire after a twelve-year teaching career.

My son, now a freshman in high school, has no memory of me before. He was two years old when my symptoms first started, he was three when I received my UCTD diagnosis. All he knows of me is prescription bottles lined up on the kitchen counter. Doctors appointments written on the family calendar hanging on our kitchen wall. A leg that often hurts. A mom who walks slowly.

I think of words my son used to say. Chocolate chips were called baby chocolates. Ground turkey was called little meats. And my favorite involved the bakery department in our local market. Every time we shopped, we always walked by the beautiful cakes section before we made our way to the checkout line. Though my son tells me he’s too old to call them baby chocolates, I sometimes do. Because changing the name doesn’t change the item.

It works the same way with my diagnosis. Being given a name doesn’t make the pain any easier to bear. It doesn’t mean new symptoms will cease to develop. It doesn’t mean my medical team has all the answers.

At the time, I truly felt relief upon learning it was UCTD. Every day I am beyond-words-grateful that I was not diagnosed with a life-threatening illness. However, now I have a better understanding of what to expect. After all these years, I have more realistic definition for Undifferentiated Connective Tissue Disease.

Undifferentiated Connective Tissue Disease is a fancy way of saying doctors aren’t entirely sure. They don’t know exactly what is going on in your body, they don’t know exactly how it will play out, and they don’t know exactly what to call it so they use this catch-all phrase. Because let’s face it, “undifferentiated” sounds much more scientific than “unknown.”

And that’s the biggest piece of the puzzle that is missing. When my rheumatologist provided my diagnosis, I really thought the hard part was behind me. But that’s not true at all. The hard part has been every day after. The hard part is learning to live as fully, as comfortably, and as authentically as possible.

Wendy Kennar is a mother, writer, and former teacher. Her writing has appeared in a number of publications, both in print and online. You can read more from Wendy at www.wendykennar.com where she writes about books, boys, and bodies (living with an invisible disability). You can also find Wendy on Instagram @wendykennar. Wendy is currently at work on a memoir-in-essays.