# How Do Patients with Hypermobile Ehlers-Danlos Syndrome Cope with This Medical Condition? An Analysis of Autobiographical Narratives in Relation to Pain Perception and Affect Regulation Capabilities

## TL;DR

This study explores how patients with hypermobile Ehlers-Danlos syndrome cope with their condition by analyzing their autobiographical narratives and their connections to pain and emotional regulation.

## Contribution

The study introduces a novel approach linking linguistic analysis of personal narratives to pain perception and emotional regulation in hEDS patients.

## Key findings

- Linguistic measures correlated with affect regulation and pain perception in neutral, positive, and disease narratives.
- Significant differences were found between neutral and diagnosis-related narratives.
- Chronic pain and rare disease experiences are meaningful and support coping abilities.

## Abstract

Background/Objectives: Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common form of EDS, characterized by joint hypermobility, skin findings, and joint pains or recurrent dislocations that may also be associated with other several extra-articular symptoms. A deficit in the affect regulation represents a risk element in the development of both physical and mental health, as well as in a greater pain perception. The present study aims at exploring the associations between linguistic characteristics associated with different autobiographical memories and affect regulation and pain measures in patients affected by hEDS. A further aim is to explore the possible differences in linguistic measures between different episodes. Methods: Twenty-five patients with hEDS diagnoses (mean age = 38.32; SD = 17.00; 23 female) in treatment at the Physical Medicine and Rehabilitation Department of Umberto I Hospital in Rome completed a socio-demographic questionnaire, the Difficulties in Emotion Regulation Scale (DERS), the 20-item Toronto Alexithymia Scale (TAS-20), and the Brief Pain Inventory (BPI), as well as an interview aimed at collecting memories regarding neutral, positive, and negative events and the medical condition. The transcriptions of the interviews were analyzed using a computerized linguistic measure of the referential process (RP). Results: A correlational analysis showed several significant associations among the linguistic measures, affect regulation, and perception of pain, applied to neutral, positive, and disease condition narratives. Only few significant associations emerged regarding the negative episode. Moreover, significant differences emerged between the neutral event compared with the positive, negative, and diagnosis episodes, especially with the latter. Conclusions: The present findings seem to confirm the association between affect regulation, pain, and linguistic measures, sustaining an elaborative process. Specifically, the experience of chronic pain associated with the discovery of the rare disease becomes a meaningful experience in one’s life condition and supports the ability to cope with the experience of chronicity.