When Your Immune System Crashes the Party

When I wasn't looking, primary biliary cholangitis (PBC) and autoimmune hepatitis showed up and made themselves at home. I learned to live with these "innocent" symptoms: itching, digestive hiccups, GERD, fatigue, and soreness around my liver and shoulder, which felt manageable. I had no idea that was only the start.

New diagnoses: IBS, Sjogren's, and more

Like any teenage house party, they just keep coming.

That first invitation did not stay small. By 2019, irritable bowel syndrome (IBS) and Sjogren's syndrome joined the party, and my colon could not decide between constipated and diarrhea, sometimes both in one day.

In 2021 and 2022, I had my first real autoimmune flare, a flare of Epstein-Barr virus (EBV), and hemolytic anemia that showed up and vanished fast. That flare ended in pneumonia, which took over a year to heal.

An escalation of symptoms and serious autoimmune flares

Then 2024 arrived with a COVID-19 diagnosis. A month later I had 450 cc of fluid around my heart and severe pulmonary arterial hypertension (PAH). An autoimmune flare puzzled physicians, APLs went single positive, hemolytic anemia briefly returned, and prednisone plus oxygen issues limited my mobility. That year got serious.

By 2025, a second bout of COVID-19 brought Epstein-Barr virus back, along with a massive autoimmune flare and worsening PAH. My APLs went triple positive, and Raynaud's, fibromyalgia, and more conditions joined the guest list.

The house was trashed, and the party had spiraled past what I could manage alone.

Coming up with a calculated treatment plan

By 2026, vasculitis showed up too, and we finally landed on a name for it: a rare autoimmune disease doctors call overlapping lupus. Though it is really my own custom disease, a little of everything and not quite all of any one thing.

That is when the SWAT team got called in: a calculated treatment plan with monthly infusions for 6 months, aimed at clearing the house out for good. I am also doing genetic testing to target my treatment, since my care team says this presentation has not been treated before. Today there are so many options and resources, giving people a chance to heal and live long, happy lives.

I am sharing my own experience, not medical advice. Each person's body, diagnoses, and treatment plan belong between them and their healthcare team. This is what living with it looks like for me.

What does healthy feel like anymore?

PBC taught me my first lesson in fatigue, and every diagnosis since has added to my fatigue debt. I am young, successful, and busy, so there is a hum of things I "should" do. It stings when my body votes no. Fatigue is not just tired - it is my battery dying midsentence while I am talking.

I check my breathing constantly now. Am I getting better, or worse? Is the treatment working, or am I just really good at pretending it is? It feels like a huge debate in a packed auditorium, except it is a party of one: me.

People don't understand what living with these conditions is like

People sort me into one of two boxes. Either I am at death's door or I am being dramatic, with no room for the truth in between. The second I post a photo with an infusion pole, people suddenly decide I am sick, as if a rare flare was not enough proof already.

Some people tell me my life is sad, or that I need to get better, as if I have not spent every waking hour doing exactly that. That says everything about them and nothing about me.

The toll of chronic illness

The cost of illness is astronomical. The worse the illness, and the longer it drags on, the more it costs financially, emotionally, physically, and mentally.

Fatigue and finances are a brutal combination, and one never lets the other rest. Between copays, specialists, and infusion costs, my bills show up as reliably as the fatigue does. And staying sick while working to pay for it is exhausting.

Still building a life around all of it

My chronic illness experience has changed my life in a good way. I have found myself as a health advocate, blogging and helping people through my social channels.

Now that the SWAT team has cleared the house, I am rebuilding it room by room, with a new career, better habits, and a much healthier mindset.

My immune system and I are still learning how to co-exist, I am still here, still working and laughing, and still writing a much better story than the one I started with.