One of the most frustrating parts of living with autoimmune disease is realizing that, despite countless doctor appointments, blood draws, scans, and procedures, there are still far more questions than answers.
If you spend any amount of time in autoimmune support groups—and trust me, I have—you will inevitably come across the same questions:
“What really caused my disease?”
“Why wasn’t I tested for certain triggers?”
“Did stress do this?”
“Was it something I ate?”
“Could it have been a virus?”
“Did the COVID-19 vaccine play a role?”
The truth is, for many of us, the answer is painfully unsatisfying:
Nobody really knows.
As I sit here writing this diary entry, “Why Does It Hurt So Bad” by Whitney Houston keeps playing in my head. Not because Whitney had autoimmune disease, but because that question seems to sum up the experience of so many chronically ill people. We want answers, and sometimes all we get are more tests, more specialists, and more uncertainty.
🔬 The Search for a Cause
When I was diagnosed with Crohn’s disease twenty years ago, I assumed someone would eventually explain why my immune system had decided to declare war on my digestive tract.
Then, years later, Myasthenia Gravis joined the party uninvited.
Apparently, my immune system looked at Crohn’s disease and thought, “You know what would really spice things up around here? A second autoimmune disease.”
Because clearly one lifetime subscription to specialist appointments, prescription copays, and explaining invisible illnesses to strangers simply wasn’t enough.
Naturally, my first thought was, “What in the world is happening inside my body?”
Scientists know that autoimmune diseases occur when the immune system mistakenly attacks healthy tissue, but they still do not fully understand why this happens in certain people and not others.
Researchers believe multiple factors may contribute, including:
- Genetics and family history
- Infections and viruses
- Hormonal changes
- Environmental exposures
- Chronic stress
- Smoking
- Gut microbiome changes
- Other autoimmune diseases
For many patients, it is likely not one single event but rather several factors colliding at the wrong time.
Unfortunately, there is no magical blood test that can tell us exactly why we developed Crohn’s disease, lupus, rheumatoid arthritis, Myasthenia Gravis, or any of the more than one hundred recognized autoimmune conditions.
🩺 Why Aren’t We Tested for Every Possible Trigger?
This question comes up constantly in autoimmune communities.
Many people feel that doctors are missing something important because they were never tested for food sensitivities, vitamin deficiencies, mold exposure, infections, or other potential triggers.
The reality is more complicated.
Doctors do investigate many underlying issues depending on a patient’s symptoms. They may check vitamin levels, thyroid function, infections, sleep disorders, and signs of additional autoimmune diseases.
However, medicine simply does not yet have a universal test that explains why someone develops autoimmune disease.
That uncertainty can be incredibly difficult to accept—especially when you are the one living with the symptoms every day.
And let’s be honest: sometimes the internet makes it sound as though the answer is hidden in a vitamin deficiency, an allergy test, a mysterious toxin, or the fact that Mercury happened to be in retrograde when your symptoms started.
At this point, I’ve heard so many theories that I half expect someone to blame my Crohn’s disease on eating too many Lunchables in the 1990s.
I wish I could tell you that I handle all of this uncertainty with grace and patience, but that would be a lie. Like many people with chronic illnesses, I have spent more nights than I care to admit going down a Google rabbit hole at midnight, comparing symptoms, reading medical journals that require a dictionary to understand, and briefly convincing myself that I had somehow earned an honorary degree in immunology.
Spoiler alert: I have not.
💉 The COVID-19 Vaccine Conversation
Another topic that frequently arises in autoimmune communities is whether COVID-19 vaccines caused or triggered autoimmune diseases.
Some people firmly believe their symptoms began shortly after vaccination. Others believe the vaccines worsened existing autoimmune conditions.
Researchers have studied these concerns extensively. While there have been rare reports of autoimmune symptoms developing after vaccination, current evidence has not established that COVID-19 vaccines are a common cause of autoimmune disease. In fact, scientists continue to study the complicated relationship between infections, immune responses, genetics, and vaccination.
What makes this conversation even more difficult is that COVID-19 infection itself has also been associated with immune system complications in some individuals.
For patients trying to understand their own medical journey, it can feel impossible to separate coincidence from causation.
And that uncertainty leaves many people searching for answers that medicine simply does not yet have.
🌫️ Living in the Gray Area
I think one of the hardest parts of chronic illness is learning to live in the gray area.
As patients, we want certainty.
We want a reason.
We want someone to point to a specific event and say, “This is exactly why this happened.”
Instead, we end up doing what every chronically ill person eventually does: opening Google at 11:47 p.m., typing in our symptoms, and convincing ourselves that we’ve either discovered a groundbreaking medical theory or need to schedule three new specialist appointments by morning.
Many of us become accidental experts in diseases we never asked to have.
Some days, that search for answers feels empowering.
Other days, it feels exhausting.
Because while science continues to search for the “why,” many of us are still juggling appointments, medications, insurance approvals, and enough patient portal passwords to qualify as IT professionals.
If there is one thing I have learned from living with both Crohn’s disease and MuSK-positive Myasthenia Gravis, it is this:
Not having all the answers does not make your symptoms any less real.
And while researchers continue to study autoimmune disease, perhaps the most important thing we can do is listen to one another, share our experiences, and remember that we are navigating questions that medicine itself is still trying to answer.
💜 Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.
If this story resonated with you, taught you something new, or reminded you that you’re not alone, please consider liking, subscribing, and sharing this diary entry.
— Kia Lorice
Founder • Author • Advocate • Future Wellness Coach
The Dual Diagnosis Diaries 💜
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