Table 1.
The prevalence of institutional betrayal, trauma exposure, mental health symptoms, unmet needs, and future healthcare expectations coded within the written responses.
| Experience self-reported | % EDS patients with experience | n | Aggregate example phrase |
|---|---|---|---|
| Institutional betrayal experiences | 48.0 | 50 | “Nobody I’ve seen even knew what EDS was” (omission); “My pain is always blamed on mental causes” (commission) |
| Isolated commission | 6.7 | 7 | |
| Isolated omission | 11.5 | 12 | |
| Systemic commission | 17.3 | 18 | |
| Systemic omission | 23.1 | 24 | |
| Insurance difficulties | 6.7 | 7 | |
| Indicator/index event | 99.0 | 103 | “My EDS symptoms alongside my other health issues are becoming increasingly debilitating in everyday life.” (EDS, other) |
| EDS | 33.7 | 35 | |
| Pain | 20.2 | 21 | |
| Mental health | 83.7 | 87 | |
| Addiction | 1.0 | 1 | |
| Other | 18.3 | 19 | |
| Trauma exposure | 7.7 | 8 | “The sheer number of complications due to this last misdiagnosis have left me anxious and reluctant in seeking future healthcare…but I’m still scared to face this alone.” (Medical trauma, anxiety, loneliness) |
| Medical trauma | 5.8 | 6 | |
| Interpersonal trauma | 1.9 | 2 | |
| Trauma and mental health symptoms | 91.4 | 95 | |
| Anxiety, stress, PTSD, fear | 59.6 | 62 | |
| Depression, sadness, hopelessness | 54.8 | 57 | |
| Tiredness, exhaustion | 8.7 | 9 | |
| Anger, irritability, annoyance | 15.4 | 16 | |
| Loneliness, isolation | 17.3 | 18 | |
| Trust in HCP | 26.9 | 28 | “My doctor is doing their best, but my psychiatrist is less understanding.” (Negative, positive trust) |
| Negative | 22.1 | 23 | |
| Positive | 6.7 | 7 | |
| Expectations | 40.4 | 62 | “Most visits it feels like I need to fight to be heard. . . Otherwise they don’t seem to care enough.” (Self-advocacy, symptoms dismissed) |
| Provider incompetence | 20.2 | 21 | |
| Not being believed/symptoms dismissed | 19.2 | 20 | |
| Poor care/medical harm | 10.6 | 11 | |
| Self-advocacy | 22.1 | 23 | |
| Nothing is going to change | 24.0 | 25 | |
| Needs unmet | 99.0 | 103 | “I wish my doctors better understood the pain that comes with my subtype. It can be hard to bear.” (HCP education, physical health) |
| HCP education/self-education/insurance changes | 30.8 | 32 | |
| Physical health | 51.9 | 54 | |
| Mental health | 87.5 | 91 | |
| Social needs | 22.1 | 23 |
EDS, Ehlers-Danlos Syndrome; HCP, healthcare provider; n, number of patients; PTSD, post-traumatic stress disorder.