The burden of chronic illness life when others don’t believe you

The exhaustion that comes from not being believed about the details of my life with myasthenia gravis (MG) isn’t something that announces itself all at once. It settles in slowly, the way a long winter works its way into your bones. Before you know it, you’re carrying a weight you never agreed to.

Disbelief by others rarely arrives as a single moment; it shows up as a series of small dismissals, each one subtle enough to overlook on its own, but heavy enough to reshape the way you move through the world when they begin to stack together. You start preparing for doubt before you even speak, rehearsing explanations in your head, softening the truth so it doesn’t sound like too much, and bracing yourself for the possibility that someone will question what you already know to be real. Somewhere along the way, the effort of managing disbelief becomes as familiar as managing the symptoms themselves.

I’ve spent 16 years trying to get people to believe me. My symptoms began during my military deployment to Iraq, appearing in patterns no one could explain and that didn’t fit neatly into anyone’s expectations of what illness should look like. From the outside, it seemed sudden and suspicious, and instead of curiosity or concern, I was met with accusations of faking, malingering, and trying to get out of deployment. The truth was that something was happening inside my body that I didn’t have language for yet, and neither did anyone around me. But disbelief doesn’t wait for clarity; it fills the silence long before answers arrive.

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When I was sent back stateside, the disbelief followed me into every exam room and every conversation. A year-long medical discharge process eventually became a medical retirement, but even that didn’t grant legitimacy to what I was feeling. My symptoms continued to progress, and each time I tried to explain what was happening, I was told it was stress, or PTSD, or functional neurological disorder — anything except the possibility that something was physiologically wrong.

The thing is, I knew. I knew the weakness wasn’t psychological. I knew the breathing changes weren’t anxiety. I knew the fatigue wasn’t depression. I knew something was fundamentally wrong, even if I couldn’t name it yet. But knowing and being believed are two very different experiences, and the gap between them can feel like a canyon.

It took until 2017 for someone to finally start listening, 2018 to receive my diagnosis, 2019 to have my thymectomy, and 2022, when we moved to Wisconsin, to finally feel what it was like to have a care team that cared. That kind of validation doesn’t erase the years of dismissal, but it does begin to soften the places where disbelief once lived.

And yet, I still encounter people who doubt me — family members, friends, community members, and others who assume I’m exaggerating, attention seeking, or somehow benefiting from being unwell. These are people who believe their interpretation of my body more than my own lived experience inside it. Disbelief doesn’t disappear just because the medical chart finally caught up.

What I’ve learned is that disbelief has layers. There’s the kind that comes from ignorance by people who simply don’t understand MG and don’t know what they don’t know. That kind can be frustrating, but it’s often fixable. Then there’s the disbelief that comes from dismissal by those who’ve already decided what they think or know and aren’t interested in learning anything different. That kind is heavier, because it asks you to choose between over-explaining and protecting your energy. And then there’s the disbelief that comes from your own history, the part of you that still braces for impact because you’ve been doubted for so long that you expect it even when no one has said a word.

I’ve learned that I don’t owe everyone an explanation. I don’t have to justify my symptoms. I don’t have to convince anyone that my experience is real. I don’t have to hand over my medical history like a permission slip. My body is not a debate topic, and my truth is not a group project.

What I owe myself is honesty, compassion, and the freedom to believe my own experience, even when others don’t. And what I owe myself most is the right to walk away from conversations that drain me more than they help.

Being doubted for so long taught me something I didn’t expect: to trust myself. It taught me to listen to my body even when others didn’t, and to keep searching for answers even when the people around me stopped looking. It taught me that my truth doesn’t need an audience to be real.

I still wish disbelief wasn’t part of my story and folks understood that invisible doesn’t mean imaginary. I wish people knew how much strength it takes to keep advocating for yourself after years of being dismissed.

I know my heart. I know my truth. And I no longer need anyone’s permission to believe myself.

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.