Beyond the Filter: The Shift Toward Authenticity in Chronic Illness Advocacy
For many, social media is a curated gallery of highlights—the “beautiful opportunities” and the “sun.” But for those living with chronic pain, the digital screen often masks a starkly different reality. The recent openness of Leuven-based author and content creator Elisabeth Lucie Baeten highlights a growing trend: the dismantling of the “perfect” online persona to make room for the invisible struggles of health.
The Paradox of the Digital Persona
The gap between a public image and private suffering is a modern psychological challenge. Baeten, known for her sharp wit and characters like “Katrien from Political PR,” experienced this duality firsthand. Even as her Instagram persona garnered a Kastaar media prize and widespread attention, her private life was increasingly defined by what she calls a “horizontal existence.”
This trend of “performing wellness” while struggling internally is common among high-profile creators. By sharing that she used social media to convince herself that things were fine, Baeten points to a broader societal shift where creators are beginning to prioritize raw honesty over aesthetic perfection.
The Psychological Weight of the Undiagnosed
One of the most challenging aspects of chronic illness is the lack of a clear diagnosis. Baeten described the struggle of waiting for “proof” in the form of a medical finding before feeling entitled to share her pain—a thought she later dismissed as “bullshit.”
The trend toward validating “patient-reported outcomes” over strict clinical labels is gaining momentum. The reality of pain does not change based on whether a doctor can name it. This shift in perspective helps combat the deep sense of loneliness that occurs when a person feels “on pause” while the rest of the world continues to move forward.
Redefining Invisible Illness in the Public Eye
Invisible illnesses—conditions that aren’t immediately apparent to an observer—often lead to skepticism or misunderstanding. By breaking her silence, Baeten is part of a movement that sheds light on the “invisible reality” of chronic pain.
The massive wave of support she received from followers and other famous Flemings suggests a growing public appetite for this vulnerability. As more public figures share their experiences with conditions like adenomyosis or undiagnosed chronic pain, the stigma surrounding “invisible” disabilities begins to fade.
For those in the creative industry, this trend is also impacting how work is managed. Baeten noted the necessity of canceling or postponing work obligations when her body forced her into a horizontal state, highlighting the need for more flexible professional environments that accommodate fluctuating health.
Further Reading on Creative Resilience
To understand more about the intersection of art and personal struggle, explore the KU Leuven stories on Elisabeth Lucie Baeten or follow her journey on Instagram.
Frequently Asked Questions
What is an “invisible illness”?
An invisible illness is a medical condition that is not immediately obvious to others, such as chronic pain or adenomyosis, which can lead to a lack of understanding from the public.
Why is a diagnosis so important for some patients?
Many people feel they need medical “proof” or a label to validate their suffering to others and themselves, although the physical pain remains the same regardless of the diagnosis.
How does social media affect those with chronic pain?
Social media can create a distorted image of a person’s life, where only the “better moments” are shared, potentially increasing the feeling of isolation for the creator during periods of illness.
Do you believe social media is becoming a safer space for discussing invisible illnesses?
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