One of the more disturbing elements of a bad experiences with health care is that every time my health gets worse, not only do I have to deal with that but also with triggered memories. It’s a heavy reminder om how vulnerable I am. The last couple of days my heart has been hurting, my legs burning with my pain and my temperature has been bouncing up and down. I know that if I had a doctor who could help my find out why this is happening more and more frequently, I could release myself from a lot of worrying and get proper help. But there is no such doctor available. The doctor who diagnosed me with POTS and central sensitization is no longer available and my GP doesn’t know what POTS is and doesn’t have the time to care. Going to the ER during summer chaos is certainly not an option.
Of course, all the memories and the anxiety it brings make my symptoms worse and then I start doubting myself. What if all of this is just in my head? What if the PEM and sensory overloads aren’t really happening? I know this is not the case but every time I’ve been pushed and pressured to keep doing things that are hurting myself while being told that it’s just in my head – it did something to me.