All Flared Up

Every year, around November/December, I pick a word for the upcoming year. Something actionable, something to focus on for the year. Something that will guide me in my actions. I learned this tradition from a dear friend of mine, one of those friends that gets you just the way you are. No explaining needed.

For 2026, I chose the word Flexibility.

I chose it before my new diagnosis.

Before I realized that my life would change dramatically and that I would be forced to bend in ways I have not been willing to do for some time.

I chose the word when I was feeling particularly unwell, despite doing everything that I knew to do: Eating from the rainbow. Avoiding gluten. Quitting sugar. Getting more healthy fats and protein. Setting boundaries. Focusing on quality sleep. Taking supplements and herbs.

I’d done it all.

But still felt like shit.

Is this just a Sjögren’s flare? Is it menopause? Is it a combination thereof, or is it something entirely new? Perhaps all I needed was to approach it in a different way, as my husband gently suggested. “You did pick flexibility as your word for the year, don’t forget,” he pointed out.

Though I was no stranger to feeling tired, thanks to Sjögren’s, a fatigue weighed on me like none I’d ever experienced. My eyelids were heavy and droopy, as if wearing mini-weighted vests. I wondered if I had Myasthenia Gravis. My new family doctor asked me to take a photo of my eyes the next time it happened. I did. When I showed it to him, he finally agreed to do the blood test, though the phlebotomist had to ask him what Myasthenia Gravis even was.

It wasn’t that. But my liver enzymes were high. I had an AST of 100 and an ALT of 147. (Normal AST is 8-38 U/L and ALT is 4-44 U/L.) These values were just as they had been 8 months previously, although my then rheumatologist didn’t think this was anything to be concerned about.

“This seems to be a trend,” I told my family doctor. “My rheumatologist thought it was simply an inflammatory marker related to my Sjögren’s and that it was nothing to worry about. But, I’m starting to question this.”

“Well, yes. Your values are indeed slightly elevated,” he admitted. “So, let’s repeat the blood work in three months.”

“Ok,” I said, deeply frustrated about having to wait. But also aware there were hoops to go through with regard to my health insurance’s coverage of procedures.

In the meantime, I added quitting alcohol to my lifestyle interventions.

Three months later, I had an AST of 251 and an ALT of 314. My doctor’s concern deepened the lines between his graying eyebrows. “I think now it would be appropriate for you to see a specialist.”

‘You think?’ I wanted to say, but didn’t. He was a nice guy after all.

The first available appointment with a hepatologist for an ultrasound of my liver was in one month. More waiting. More feeling like I’d been run over by a truck. Fatigue so intense I couldn’t think straight. A feeling like I was looking at life through a thick, black veil. Like I was wading through chest-high water.

The hepatologist did the ultrasound and then referred me to the hospital for a liver biopsy. “That’s the only way we will know if it’s damage due to medications or supplements, or if it’s autoimmune related,” he explained.

I had to wait another month to get the biopsy.

And another three weeks to get the diagnosis.

“It’s Autoimmune Hepatitis,” said the hospital hepatologist, a thin, middle-aged woman who spoke perfect English and had friendly eyes. “The good news is, there is no damage to the liver tissue.”

Even though me and ChatGPT had already figured it out, the diagnosis still came as a shock.

My doctor laid out the treatment plan: begin with 30mg Prednisolone, slowly taper off of that one week at a time as the liver enzymes stabilize and then introduce Azathioprine, an immunosuppressive medication. I would then need to stay on Azathioprine for the rest of my life.

Like a drug company commercial, she rattled off the possible side-effects of Azathioprine in quick succession: nausea and vomiting (but just in the beginning), skin cancer (so you better use 50 SPF and cover your skin when you are out in the sun), susceptibility to colds and flus (you will need to get the flu vaccine, as well as some others), and a 4-6 fold increased risk of lymphoma (particularly with long-term use – which would of course be relevant for me).

“What can I expect to get better?” I asked, put off by everything that could go wrong.

“Our goal is to get the inflammation under control, so that no damage is done to the liver. I will tell you even with the medication the liver values may fluctuate – this is quite common. And, unfortunately, I cannot promise you that the fatigue will go away. For some people it does, but for others it does not.”

“Fatigue is by far and away my main complaint, so the fact that this might not improve is super depressing,” I said. I swallowed hard against emotions that started to get stuck in my throat. “And what would happen if I decide not to go forward with the medication?” I needed to know. I mean, what’s the point of taking medication if you don’t feel better?

“If we do not begin treatment, you will end up with fibrosis in the next couple of years and then eventually cirrhosis of the liver. At that point, you will be looking at liver failure and the need for a liver transplant,” she said. Her eyes squinted above her light blue mask, like she was sorry to have to say this.

Since I had anticipated the diagnosis, I had already looked up the side-effects of prednisolone: weight gain, mood swings, fluid retention, high blood sugar, high blood pressure, osteoporosis, and increased infection risk. Believe it or not, among all of this gloom and doom, the side effect that bothered me the most was weight gain.

I have an eating disorder. Or disordered eating, however you want to look at it. I am not anorexic or bulimic. Instead, I have a mix of Anorexia Athletica (using exercise to purge) and Orthorexia (obsession with eating healthy foods). So, the thought of gaining weight, even though I was underweight, was extremely unnerving. It pushed every button. It made me wonder (seriously): am I was willing to gain weight in order to be healthy again?

When I realized that the answer to that question was a resounding NO. That I would rather be skinny and sick, then healthy and chubby. I understood, perhaps for the first time in my life, how deeply ingrained my self-hatred was. This is, after all, the definition of auto-immunity: lack of tolerance of self.

After I admitted this to myself, it was as if a light turned on. I could see everything that really mattered in exquisite detail and I knew exactly what I had to do.

I had to learn to tolerate myself. If I cannot do that, I will never heal.

Step One: Be Flexible

Step Two: Be Kind to Myself

Step Two: Take the Medication

Rinse and repeat.