If FND Scepticism Feels Like a Personal Attack, It Might Be Time for Introspection

So, you finally have a diagnosis. Naturally, you want to make sense of it and that often means reaching out to others who are going through something similar.

Joining a community can help. It is a space to share information, learn from others, and sometimes discover knowledge that even the medical professionals supporting you might not have. Sometimes it is simply a place to be understood, a shoulder to lean on when you need it most.

Patient communities become especially important in conditions like IBS and FND, which are products of medical constructivism (primarily defined by consensus based on symptom clusters, rather than measurable physiology itself), where patients are often orphaned by medical systems. As a result, patient communities end up becoming their only source of support.

There is a real danger here and I am not talking about communities in general, many of which are incredibly supportive. My concern is the way echo chambers can form, unintentionally isolating members or reinforcing certain beliefs.

This creates insulation around community members, through which the illness can become an unhealthy hyper-identification with disease.

This is dangerous for a number of reasons:

1. Possibility of misdiagnosis
   
   Misinterpretation of medical data is always a possibility. So regardless of your diagnosis (whether something with biomarkers like MS or something without biomarkers like FND), you need to monitor your condition and keep diagnostic doors open to the possibility of misdiagnosis. If the illness becomes part of your identity in this way, you risk closing diagnostic doors behind yourself and missing other treatable and reversible conditions.
   
   
2. Epistemic closure
   
   When I started publicly voicing my criticism about the validity of FND, prominent members of the FND community immediately expressed outrage and even blocked me on social media (some without even engaging me in discussion). When an illness becomes part of someone’s identity, criticism is perceived as a personal attack. In communities like this, lived experiences are treated as evidence, and critics are immediately dismissed as ignorant, biased, or malicious. This creates a self-sealing system: “If you disagree, that just proves you don’t understand.
   
   Having a symptom doesn't mean you know its cause. Symptoms are signals, not diagnoses. Assuming origin without evidence can lock people into the wrong explanation and delay real answers.
   
   
3. Illness as identity
   
   When an illness becomes central to identity, community members may begin to prioritise identity over overall health. They gravitate towards experiences and advice that reinforce the group’s consensus, while potentially overlooking strategies or treatments that fall outside it. Over time, this narrows perspective, making it harder to pursue improvement or remain open to alternative diagnoses. The echo chamber strengthens, and diagnostic doors quietly close.
   
   ADHD is another example that illustrates how this dynamic can take shape. A diagnosis intended to guide support can, in some contexts, become a central identity marker for both individuals and families.
   
   In certain cases, parents may respond defensively to criticism or alternative perspectives, rather than exploring those concerns in the context of their child’s overall health. When a diagnosis becomes intertwined with identity, questioning it can feel personal rather than clinical.
   
   For example, symptoms labelled as ADHD may reflect underlying issues such as blood pressure changes, sleep disorders, thyroid problems, neurological conditions, vitamin deficiencies, or mental health disorders. When the diagnosis is tied to identity, further investigation can feel threatening rather than protective, narrowing inquiry and risking missed opportunities for accurate diagnosis.
   
   

In the end, patient communities are not inherently bad. They can offer support, shared knowledge, and understanding. But when illness becomes identity, when communities close themselves off to critique, and when diagnostic doors are shut, the consequences can be serious.

We need to stay vigilant, keep questioning, and never let the pursuit of understanding be replaced by consensus or comfort. Your health is not defined by a community, a label, or an identity. Keep your mind open, your options open, and never stop looking for the truth.

Personally, I believe the philosophy surrounding functional disorders carries a serious risk of devolving into system-sanctioned and protected malpractice when both doctors and patients become overly invested in a philosophical framework at the expense of rigorous investigation. If that happens, history will judge us harshly: we had the tools, we had the technology, yet we allowed what amounts to a modern form of hysteria to persist into our century

If this last statement feels like an attack, it may be time for serious introspection.