When you live with an invisible or rare disease, your struggles often go unseen and misunderstood. The world operates on what it can see and measure—visible wounds, observable disabilities, tangible evidence of suffering. But for those of us battling chronic illnesses that don’t manifest outwardly, the challenges go beyond the pain; they extend into a social world that frequently invalidates or stigmatizes our experiences.
One of the most striking examples of this misunderstanding is how society handles behavior influenced by medical conditions. Take, for instance, hypoglycemia—a condition where low blood sugar can cause confusion, aggression, or even physical violence. As a paramedic, I’ve been physically attacked more than once by patients experiencing hypoglycemia. It’s not personal; it’s a physiological response, and most medical professionals know this. In fact, society accepts that the aggression isn’t intentional and doesn’t hold these patients criminally liable for their actions. Yet, the same understanding doesn’t extend to those of us dealing with chronic pain, mood swings, or behavioral changes resulting from invisible illnesses.
If someone with Ehlers-Danlos Syndrome, fibromyalgia, or another chronic condition lashes out due to pain or emotional exhaustion, they’re often labeled as rude, uncooperative, or even toxic. Society struggles to grasp what it can’t see, and the stigma becomes a heavier burden than the illness itself. There’s no widespread education or support for how to cope with the mental and emotional toll of living in a body that constantly betrays you.
Where’s the Empathy?
Why is it that someone in a hypoglycemic state is granted understanding, but someone struggling with the mental fallout of a chronic illness isn’t? The truth is, the lack of visible evidence of our suffering makes it harder for others to empathize. Pain isn’t measurable, and mood changes caused by chronic conditions are often chalked up to personality flaws rather than symptoms.
There are no classes or resources to teach us—or others—how to navigate the emotional upheaval of living with an invisible illness. The tools to manage the overlap between physical health and mental well-being simply aren’t readily available. Worse, when someone with a chronic condition acts out of character, society often doesn’t connect the behavior to their illness. Instead, we’re dismissed or, worse, vilified.
Changing the Conversation
It’s time to shift the narrative. We need to create spaces where those with invisible and rare diseases can not only share their stories but also learn how to process their emotions and behaviors. Advocacy isn’t just about raising awareness; it’s about building systems of support and understanding that go beyond the physical symptoms.
We need:
Education: Teach healthcare providers, caregivers, and the general public about the emotional and behavioral impacts of chronic illnesses.
Resources: Develop therapy programs and classes that address the intersection of physical and mental health for those with invisible diseases.
Empathy: Encourage a culture where unseen suffering is recognized and validated, not stigmatized.
As a community, we must push for these changes. Our experiences may be invisible to the naked eye, but they are very real. By sharing our stories and demanding better, we can create a world that sees us, hears us, and helps us heal.
If you’ve experienced these challenges, let’s start the conversation. Together, we can break the stigma surrounding invisible and rare diseases.
Let me know your thoughts below or share your own story—I’d love to hear from you.
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