I have been sick with ME for about 13-14 years. I attended an LP course around 2012-2013.
At that time I was on several courses/meetings organised by the Norwegian Labour and Welfare Administration. I completed the course in eastern Norway somewhere. The Norwegian Labour and Welfare Administration recommended the course and paid for it. It was my activity plan for the work assessment allowance.
I felt the course leaders and the LP course had a clan/sect-like behaviour when they joined forces against those of us who didn’t have the “hallelujah” feeling and see the light. Either you worshipped them and told about the miracle this was, or you were looked down upon, as a worse and weaker human being who couldn’t do what everyone else did.
I remember best the feeling of pressure regarding the contract we had to sign. I felt they looked down on me because I questioned why we had to sign that we were recovered, even if we weren’t.
After approximately 6 months of doing the LP method, I was so ill that I couldn’t take it any more. I had to use a walker to get to the bathroom. I needed help with everything. I was in hospital a lot due to complications.
I quit with LP after consultation with a hospital doctor and my GP.
I remember there was a quarrel with my GP, as he hadn’t approved the LP-course or been consulted by the Norwegian Labour and Welfare Administration.
I deteriorated a lot. I’m the kind of person who by nature pushes myself too much when it comes to the diagnosis. When I didn’t recover with LP, I said it as it was to people around me. I “stood forward” with my results.
Then I was stopped on the street by the LP instructor and her friend/colleague and scolded. I was told that as long as this was organised by the Norwegian Labour and Welfare Administration, they would report this to my caseworker there. Which she did, and I lost my work assessment benefit and my case was closed. I didn’t get any payments from the Norwegian Labour and Welfare Administration for 11 months because of “my reluctance to get well”.
My husband and I got into financial difficulties because of this. I had to live on his salary for almost a year.
A very angry letter was sent from my GP to the Norwegian Labour and Welfare Administration to make them understand the extent of what they were doing. Both considering that they sent me on such a course, and that they stopped payments without a backup and the huge implications that followed. In addition the LP course had worsened my health.
Later on we moved to a different part of the county. I got a new office at the Norwegian Labour and Welfare Administration to deal with and a bright case worker who saw that this was wrong. She got involved in my case, I got declared as disabled and got paid back for the period I had been without work assessment benefits.
I was told that my previous case worker was fired when my case had been brought up.
I have improved some, but am still feeling the caution this has caused in me, including concerning the topic of guilt and so on. After the LP course I received some good cognitive tools from a psychiatrist to cope with my thoughts about being good enough and techniques to cope with the pain and fatigue I live with.
I, and many others like me, have a complex disease picture and therefore many things to deal with. It helps to be properly heard at the doctor’s, being taken seriously, finding small but meaningful tasks in everyday life. After many years of chronic illness, I have learned a few tricks. Accepting the condition without giving up has been a great way to ease things for me. Take one day at a time and make the most of the moment I am in now.
Because if I keep thinking about the consequences of everything I do or don’t do, it creates stress. If I on the other than think “what do I need and want now within my limits?”, then the day will get better. If it is sleeping all day, well then I tell my family that, and it makes it easier for them to deal with. If it’s something completely different, I tell them that too. What has helped me and my family to a better everyday life is providing information and good knowledge to those around me.