This study recounts difficult and traumatic experiences reported by individuals with hEDS. EDS seems to be highly represented in our #Arachnoiditis community.
Nevertheless, I think you may find yourselves remembering your own traumatic experiences with disbelieving or hostile healthcare providers.
Mental health can be impacted even if you haven't identified these occasions as traumatic. We recommend Peer Support and/or counselling if you identify with the themes found in the study below. #trauma#ptsdawareness#Arachnoiditis#treatment
"Our participants had come to expect clinicians' negative attitudes and disbelief. Eighty-nine percent said that they felt clinicians had been disrespectful or unprofessional toward them. Another ninety-two percent said they had felt invalidated by their clinicians. One individual said, 'They don't take you seriously, or they think you're overbearing or just paranoid' (253)."
I certainly have stories of traumatic healthcare experiences that are similar in nature to the ones reported in this study. It's my belief that these experiences are very common in Arachnoiditis as well as many other rare or rarely diagnosed conditions.
Besides prioritizing the distribution of Arachnoiditis Awareness materials, what other ideas do you have to lessen how often our community members experience trauma like this?