“There’s no one-size-fits-all kind of solution”: An interpretative phenomenological analysis of the experiences of autistic individuals living with Ehlers-Danlos syndrome

Approximately a third of individuals live with multiple health conditions and this number is rising. Research suggests that living with a chronic condition can profoundly impact upon one's life and identity, however little attention has been paid to the experiences of those with multiple conditions. Ehlers-Danlos syndrome (EDS) is a rarely-diagnosed connective tissue disorder causing extensive debilitating symptoms and while these symptoms are primarily physical, EDS often co-occurs with autism. This study sought to gain insight into the experience of autistic individuals living with EDS and thus investigate how illness identity occurs with multiple conditions. Interpretative Phenomenological Analysis (IPA) was used. Semi-structured interviews were conducted with four autistic women living with EDS. Analysis resulted in three superordinate themes, consisting of 'Transformation,' 'Making sense,' and 'The negatives.' While interrelated, these themes capture the ways in which the conditions have changed the participants' lives, both positively and negatively. Furthermore, they capture how the participants make sense and create meaning in their new identities. Individuals living with co-occurring conditions have multiple illness identities which affect their overall sense of self. Within this study, participants incorporated both conditions into their new identities, although the extent to which they rejected or accepted these conditions varied individually based on numerous biopsychosocial factors, which shifted continually, including healthcare professionals' attitudes and awareness of conditions, stigma, finding community and symptom severity. Thus, illness identity is in a constant state of flux. These findings highlight the need for more individualised, supportive care for autistic individuals living with EDS.