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How My Autoimmune Disease Is Like an Octopus

Ten years ago, when my rheumatologist diagnosed me and finally put a name to my mystery illness, all I felt was gratitude and relief.

My doctor told me it was an autoimmune disease called undifferentiated connective tissue disease (UCTD). He described UCTD as having overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those more well-known diseases.

I had a name, (a name so long it warranted an acronym!) that explained the pain, weakness and fatigue in my left leg. To hear it was an autoimmune disease and not a fatal illness (before diagnosis, other specialists had tested me for cancer and leukemia), seemed like absolutely fantastic news at the time.

I incorrectly jumped to the conclusion that having this autoimmune disease would be just like living with asthma. I’d had asthma since elementary school, and I managed it by periodically using my inhaler and sometimes adjusting my physical activities. But I didn’t consider asthma to be life-changing. And I figured UCTD would work the same way.

My rheumatologist put a name to this illness, but there was much more he didn’t tell me. Looking back, I wish my doctor had kept me in his office a while longer, to go beyond the basic description, to give me a heads-up that my life would never be the same. In my naiveté, I received a diagnosis and assumed I’d learn to live with this chronic condition. I truly believed I would take some medication and get better.

But 10 years later, I know that’s not how it works.

Now I know that while getting a diagnosis is huge, it certainly isn’t the end. It doesn’t mean the questions are all answered. There are still symptoms, flare-ups, inconsistent test results that my doctor can’t explain or fully understand. I’m still subjected to a battery of tests and consultations with other specialists.

Sitting in my doctor’s office, I didn’t completely understand the definition of UCTD. It’s not merely an autoimmune disease. It is a chronic illness. But, it’s a chronic illness causing me chronic pain. And that’s the biggest difference between my autoimmune disease and my asthma.

No one told me this would be all-encompassing. That having an autoimmune disease was like having an octopus in my life, tentacles stretching out and touching one area of my life after another.

Chronic illness with chronic pain isn’t something that can go in the background, on the back burner. It’s not always front and center either.

But it certainly can’t be ignored.

Since then, I’ve also learned that a diagnosis isn’t the answer. It was merely an answer, a name or label for something that up until that point hadn’t yet been identified.

The worry, the confusion, the frustrations and the fear didn’t disappear with my diagnosis.

That morning, 10 years ago, when my husband and I sat across from my rheumatologist to get the news, my doctor did tell us UCTD is rare. “Most people have never heard of it. So if you want to walk around and call it ‘The Kennar,’ you can.”

I think we chuckled good-naturedly. I think I made a joke about always priding myself on “daring to be different.”

But since then, I’ve changed my mind. Living with an unpredictable chronic illness causing chronic pain is hard.

And I don’t want to be rare and different in this instance, to be experiencing a medical condition most people (including some of the doctors I’ve met with) have never heard of.

If I’m destined to live with a chronic medical condition, then I’d prefer it to be familiar. I’d prefer a disease that doctors can easily understand and treat.

Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.

Getty image by ArdeA.