

Madeleine ThriftVIP®
18.4K posts

@ThriftVIP
Evolving ThriftVIP #Dissabled #MEFibro ☆Unique.Eclectic☆Style #pwME 30yrs #LC ‘a luta continua’ - the struggle continues #ND Opinions my own #TryingToThrive




CONTENT WARNING Isla was only 18 years old when she died in May. She had been ill with ME since 6, later with POTS & MCAS. Her family say she faced disbelief & neglect from many professionals. Things have to change for ME patients #VerySevereME #POTS #MCAS Andrew Gwynne MP







Finally, someone did what I said to my sleep specialist 4 years ago, should be done (the one who dismissed me and my data and recommended CBTi). And, surprise, they find that poor sleep in ME must be due to physiology, not bad "sleep hygiene". link.springer.com/article/10.100…






The moment I said the word “Covid,” the primary care appointment was already over. Not in any professional sense or in any way I had ever experienced before. I watched it unfold right in front of me. This is the story of the most blatant gaslighting by a medical professional I experienced during my Long Covid journey. I was there because something had been very wrong since I had Covid. My blood pressure was suddenly high. My resting heart rate wouldn’t come down. I was dizzy, getting constant headaches, chronic fatigue, blurred vision. None of it had ever been an issue before. I explained everything. Then I said the forbidden words. “Could this be from Long Covid?” He didn’t answer. Instead, he smiled. Not in a reassuring or curious manner. Something was off. He reached out, patted my shoulder, and told me to “calm down the chaos in my mind.” Then he said, almost hysterically, “So I was at the airport the other day….” “At the luggage carousel. A woman collapses. People start screaming. ‘Is there a doctor? We need CPR’…” I sat there frozen, mortified. “I go over to help,” he continues. “But I didn’t have to.” A pause. A sneering grin. “Because she CAME AROUND again!” He leans in slightly, “On the CAROUSEL!” Then he laughs and turns to his computer, already typing up my visit summary. Just like that, the appointment shifts into something unreal. No acknowledgment of anything I said. Just a joke. A deflection within a small performance so he could avoid the conversation entirely. I could hear the final clicks of the keyboard. As quickly as he had entered, he was gone. I was still sitting there with a racing heart, the dizziness creeping back in, trying to process what had just happened. Because I understood it then clearly. He was done with me the second I said “Covid.” Everything after that was just his way of leaving without actually walking out. That was the most disturbing part: Realizing the person I went to for help had already decided not to hear me, and laughed his way out of the conversation and out the door.



