In brief: People with fibromyalgia often encounter subtle (and not-so-subtle) forms of stigma during medical consultations. When these experiences repeat over time, they can have lasting emotional effects that resemble retraumatisation. Our study explains how this happens and what clinicians can do differently.

Why this matters

Fibromyalgia affects an estimated 2–4% of people and is more common in women. Because diagnosis is symptom-based and there is no single biomarker, patients can be left feeling disbelieved or “not legitimate”. That invisibility contributes to stigma in healthcare settings.

What we did

We ran six online focus groups (3–5 participants each) with adults living with fibromyalgia across seven European countries. Groups were held in English and Estonian, audio-recorded and transcribed verbatim. We first mapped experiences onto a practical framework of stereotypes (about the condition, the person, or their behaviour) and stigma-conveying behaviours (e.g., othering, denial, non-explanation, minimising, psychologising, norm-breaking). We then completed an inductive analysis to capture themes beyond the framework. Ethical approval: University of Sheffield (ref: 04664).

Key findings

• Stigma showed up in many ways. Participants described all but one of the 18 stereotype–behaviour combinations in our framework. The most common pattern was person-othering—the sense of not being treated as a “proper” patient who merits usual clinical engagement.
• Repetition matters. Stigmatising encounters were not one-offs. Repeated experiences of dismissal, non-explanation or minimising had cumulative effects—heightened anxiety before appointments, avoidance of care, and a defensive stance in consultations.
• Trauma-like impacts. The ongoing pattern of events → experiences → effects aligns with widely used descriptions of trauma and retraumatisation in healthcare. Positive encounters were rare but powerful. When clinicians listened attentively, offered clear explanations and expressed belief, participants described these consultations as turning points that reduced distress and enabled care.

What clinicians can do (actionable take-aways)

Name and counter othering. Attend to language and non-verbal cues that position someone as outside the category of a “legitimate patient”. Small signals—inviting the person in, allowing time, collaborative agenda-setting—counteract othering.

• Validate and explain. Acknowledge the experience; offer a meaningful explanation (including when the causes are multifactorial). This reduces the harm of “psychologizing” or “non-explanatory” communication.
• Avoid being different. Language and body language that differentiates the patient from “real patients” exacerbates the stigma.
• Practice trauma awareness. Consider that repeated disabling encounters can trigger or amplify trauma reactions; design the consultation to be safe (predictable structure, permission to set the pace, brief summaries, shared action plan).

What this means for people with fibromyalgia (and families)

• Your symptoms are legitimate. The absence of a single test does not undermine the reality of pain and fatigue.
• You should not have to prove your suffering. Ask for explanations and a written plan.
• Ask for explanations and a written plan. It is reasonable to request a clear summary of what the clinician thinks is going on and what will happen next.
  

How Luminara Psychology can help

At Luminara, we offer trauma-informed, validating and structured psychological care. We can help you to:

• prepare for consultations (goals, questions, priority-setting),
• process the impact of previous negative encounters, and
• build skills for self-management alongside your clinical plan.
  
• Our starting point is simple: your experience is evidence, and our role is to help turn it into a workable plan. (This is exactly what the research supports.)
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Limitations to keep in mind

Participants were mostly recruited via advocacy groups and were multilingual, which may limit generalisability; however, strikingly similar patterns were seen across countries. The mapping step inevitably simplifies complex experiences, but it is designed as an actionable tool for practice improvement.

Viide: H. Treufeldt, C. Burton. Stigmatisation in medical encounters for patients with fibromyalgia: A focus group study. Patient Education and Counseling, 142 (2026) 109381.

1. Expert analysis and science-based insights

• The impact of stigma in healthcare: insights from my doctoral research.

A concise overview of my PhD findings — how stigma shapes doctor–patient relationships, and why this matters also in the Estonian context.