Remember how I mentioned doctors who are unfamiliar with your case can sometimes NOT believe what you’re telling them? Let’s revisit that topic since I know so many others with EDS will relate to this.
Interacting with new doctors during hospitalizations can honestly be traumatic. Most physicians are not knowledgeable about EDS/connective tissue disorders, and their related comorbidities which often result in miscommunications and/or medical gaslighting. For example; when my cyst burst, the on-call ER team seemed to think I was overreacting. After all, many teenage girls have cysts that rupture and do not need to be hospitalized and on ketamine for a week. As expected, the physicians I encountered in the ER did not have prior knowledge of EDS or visceral hyperalgesia. Regardless of their inclination to learn, in an ER setting, it is tricky for one to get up to speed on my case, as time is scarce and crisis abundant. I wasn’t just feeling the pain of a ruptured cyst but also intense vertigo, nausea, headaches, shooting stomach pain, temperature swings, sensitivity to light/noise/touch, ringing in my ears, neck spasms, unreliable vision, joint instability/pain, difficulty swallowing, chest heaviness and more. Together, the symptoms are synergistically overwhelming.
To have pain minimized and to feel misunderstood is hurtful. Sometimes it makes me angry, sometimes sad, and sometimes it results in me gaslighting myself into wondering if I am simply dramatic or weak. Not being empathic or minimizing the situation of another person can be so hurtful and even harmful. Some things one cannot truly understand until experienced. And, the truth is, everyone’s experiences are unique.