Thanks for sharing- l expect everyone with ME will recognise Rebecca’s story reflected in their own. The NHS really has to catch up & at least get back to ‘first do no harm’!
Really interesting article. I've found such a similar experience. I used to be a nurse until I got too ill with Ankylosing spondylitis (inflammatory arthritis of the spine), which comes along with debilitating chronic fatigue. I've been shocked at how little help we get, how little we get listened to and how little chronic fatigue and pain is understood. When most tests came back 'normal' I was shocked at how quickly they went to blame, shame and gaslighting. Instead of trying to come up with a solution, it very quickly went to 'its all in your head'. It's incredibly scary to feel like you have noone to turn to while your struggling to do basic tasks for yourself. Without the help of my husband, I'm not sure what would have happened to me. I'm so glad the message is getting out there though and we can rally together to raise awareness. Thank you for the article.
I am also ‘too ill to treat’. I am quite literally wasting away and yet no one knows how to treat me and hospital environments and the vast majority of medical attitudes are too dangerous for me to seek help in the very place I should be able to go when I need it. I am scared I will die of this illness – it feels like sailing towards an iceberg knowing there’s nothing you can do about it.
Thanks for sharing- l expect everyone with ME will recognise Rebecca’s story reflected in their own. The NHS really has to catch up & at least get back to ‘first do no harm’!
Awful. Just bloody awful. Thank you for sharing.
Really interesting article. I've found such a similar experience. I used to be a nurse until I got too ill with Ankylosing spondylitis (inflammatory arthritis of the spine), which comes along with debilitating chronic fatigue. I've been shocked at how little help we get, how little we get listened to and how little chronic fatigue and pain is understood. When most tests came back 'normal' I was shocked at how quickly they went to blame, shame and gaslighting. Instead of trying to come up with a solution, it very quickly went to 'its all in your head'. It's incredibly scary to feel like you have noone to turn to while your struggling to do basic tasks for yourself. Without the help of my husband, I'm not sure what would have happened to me. I'm so glad the message is getting out there though and we can rally together to raise awareness. Thank you for the article.
I am also ‘too ill to treat’. I am quite literally wasting away and yet no one knows how to treat me and hospital environments and the vast majority of medical attitudes are too dangerous for me to seek help in the very place I should be able to go when I need it. I am scared I will die of this illness – it feels like sailing towards an iceberg knowing there’s nothing you can do about it.