People have always searched for explanations when confronted with suffering that feels arbitrary or unjust. Before modern medicine, illness was blamed on gods, fate, moral failure, or contagion of the soul. In “The Plague,” Albert Camus described how people cling to meaning in the face of senseless disease, warning that “the habit of despair is worse than despair itself.” Explanation, no matter how baseless, can become something to grasp on to when randomness feels intolerable.

When confronted with disease in our scientifically sophisticated age, it is tempting to search for a single, concrete cause. For a subset of the myasthenia gravis (MG) community, vaccines have become that explanation. The impulse is deeply human. But we should be very cautious about its cost.

In “Illness as Metaphor,” Susan Sontag argued forcefully against turning disease into a story of blame. Sontag wrote, “My point is that illness is not a metaphor, and that the most truthful way of regarding illness — and the healthiest way of being ill — is one most purified of, most resistant to, metaphoric thinking.” When illness is transformed into accusation rather than understood as biology, fear replaces reason, and false certainty replaces hard truth.

Living with MG means living with uncertainty. It is, by definition, a rare and unpredictable disease, one that asks us to pay close attention to our bodies and to trust the expertise of those trained to care for them. That is why I was unsettled recently by a discussion on an MG-related blog.

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Choosing care over certainty

Several individuals described developing MG shortly after receiving vaccines. Some claimed that symptoms appeared within 24 hours of COVID-19 vaccinations. Others asserted that MG cases have increased dramatically in recent years.

These statements were presented with confidence and certainty, often using medical language and a tone that suggested the speakers were medical professionals. They were not claiming to be doctors or researchers, but the way the claims were framed carried the weight of expertise. What was missing was any scientific evidence to support such conclusions.

Questions are healthy. What troubled me was the confidence with which speculative claims were presented, without acknowledgment of uncertainty, limitations, or alternative explanations. In science and medicine, certainty is earned slowly, through data, replication, and peer review. Anecdote alone is not science. I choose to believe in science and make my healthcare decisions using as much verifiable evidence as I can gather.

I have no medical expertise. Any statements I make about the disease are based solely on limited research and personal experience. Anyone interested in learning more about the incidence of MG diagnoses can begin their query with “Epidemiology of myasthenia gravis in the United States,” published in Frontiers in Neurology.

I maintain there are more plausible explanations for what some people are observing. Over the past five or six years, millions of people have had increased contact with healthcare systems due to COVID-19, vaccination campaigns, follow-up visits, and heightened medical awareness. More doctor visits mean more opportunities for earlier diagnosis. Conditions that once went undetected, especially rare autoimmune diseases like MG, are now more likely to be identified sooner. An increase in diagnoses does not necessarily mean an increase in incidence.

We’ve seen this pattern before. Autism diagnoses rose sharply as diagnostic criteria broadened and awareness improved. Thyroid disorders, anxiety, depression, and autoimmune conditions all followed similar trajectories. The disease did not suddenly explode. Our ability to recognize it improved. Ignoring this context creates a misleading narrative that fuels fear rather than understanding.

The danger of misinformation is magnified in communities like ours. People with MG are often frightened, fatigued, and searching for answers. When unverified claims circulate, especially claims related to vaccines, an area already clouded by years of confusion and politicization, they can spill far beyond a single blog or forum. What begins as speculation in a support group can quickly migrate into the mainstream, reinforcing public mistrust of medicine and discouraging people from seeking care.

Online support groups serve a vital purpose. They offer the comfort of being understood by people who live with the same challenges. But support groups are not medical professionals. When they drift into presenting opinion as fact, they can become spaces where fear is amplified rather than eased. Authority without accountability is dangerous. So is certainty without humility.

Living with MG demands courage. It requires patience, discernment, and trust. I mean trust in evidence, in qualified professionals, and in the slow, careful process by which medical knowledge advances. We do ourselves no favors by replacing that process with rumor or conjecture. We can hold our stories with dignity and insist on truth. In a world already saturated with confusion, choosing care over certainty can certainly help.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.