Ms Anna-Karin Ulpe:

I thank the Senator for the question. It is crucial. Longing to be heard is a big thing. I saw ten different consultants over five years to try to get a diagnosis. It is so crushing to receive disbelief, hear people saying there is nothing wrong and that the only problem is that people are fat. I have been told this. I heard that I was lazy for getting my own wheelchair. I have been gaslighted so much that it is a wonder I am still alive today, to be honest. We have to be so strong not to disintegrate completely from all of this. The big thing to change is education. Everyone in the health service should be educated about ME, as should everybody working with disability and social care, so they recognise how ill and how disabled we are and how many accommodations we need to access basic healthcare. Getting this recognition would mean so much.

I will tell the committee what happened when I saw the first consultant who understood my illness and who listened to me. I was a beautiful May day, with flowering fruit trees all around. It felt like I had come to paradise because I was seen. I cried with relief in the car all they way back from Tullamore that day. It was a cathartic experience that finally somebody believed me and saw me and that now my journey to get help could begin. He helped me with all of the paperwork for housing. He got me medication. Everything started then. Five years of my life were gone totally, which made me worse. Now I cannot do much but before all this started I had begun to get a little bit better. I was able to do a little bit of light yoga and have more of a social life. Because of all the fighting, I do not know whether I will ever get back to that level.