If I had believed all the negative things I read on the net, I would not have recovered

ME or chronic fatigue syndrome has become very widespread over the last few years, but little is still known about this new, but common disease. We read about people with fatigue lying in darkened rooms, unable to perform the simplest task, go to school or to work. Those most severely affected need nursing, and some have to be fed through a tube.  There are various causes that can trigger this disease, and each case is different.

My perfect life ended during the national anthem, and I fell to the ground

The perfect life

I was living the perfect life. I was 16 years old and had everything I could ever dream of. I had top grades at school, friends and a boyfriend. I enjoyed lots of leisure activities and often played my saxophone for more than 30  hours a week. I exercised and found a part-time job as well. Everything went swimmingly, and I felt really good. But during the 17 May (Norwegian national day) procession in 2017, things suddenly came to a halt. My perfect life ended during the national anthem, and I fell to the ground. There and then I had no inkling that the coming year would be the worst of my life.

My hectic life had become too much. My body was no longer able to run on just four hours of sleep in between school and leisure activities. The body had been battling through a tough life for far too long, and suddenly I hit the wall. When I now look back on my life at that time, I do not understand why I didn’t collapse much earlier. I had been the definition of an overachiever.

One year in bed

I was admitted to Akershus University Hospital, where they took all sorts of tests. Everything came up perfect; there was nothing wrong with me. They sent me home with migraine medicine and told me to relax. Most likely I had just been overdoing things. Weeks passed. I could not get to school, but managed to attend the graduation ceremony for lower secondary school. I had applied for further schooling in Stavanger, and had been given a place. I looked forward to going there, but was in a bad shape and couldn’t even wash my own hair. Relax for another week, I told myself. This will pass.

Stubborn as I am, I was determined to go to Stavanger. I took it easy the entire summer holiday and did improve. In August I moved into the boarding school and was ready for my new life. It went surprisingly well, but I struggled with headaches and slept a lot. After my first assessment at the new school, I met the wall again. I was completely exhausted and had to go straight to bed after school in order to get back to school the next day. I didn’t get there every day. I never went shopping or to the cinema any longer, and after a while I didn’t join the others in buying Saturday evening snacks, either. Gradually people stopped asking me to join them, and I remained in my bedroom, entirely alone.  My condition grew steadily worse,  and then I was diagnosed with chronic fatigue syndrome. I had to give up on school and moved back home.

Withdrawing from the LP course

After a year of pain and exhaustion, I had tried everything. I had acupuncture and naprapathy therapies and began doing medical yoga with a physiotherapist – all to no avail. I cut out gluten and sugar, and became sick as soon as I had some. To relax didn’t work any longer, either. I felt just more and more worn out.

Throughout this year I read a lot about the Lightning Process. Having returned home, I decided to attend a course. Live Landmark was running it, and in our interview beforehand, she said all the right things. She told me about nursing patients who had to lie on the floor in the morning of the first day; but then, after a few hours, they managed to sit on a chair to follow the course. She shared how she herself had recovered from this illness. I was ecstatic. I had found the solution that would help me.

I read horror story after horror story and became sceptical

Then I started reading about Lightning Process again, looking for faults. I read horror story after horror story and became sceptical. There seemed to be a witch hunt for Landmark, and some ME patients accused her of fraud. I read about several people who had got worse after the course, that she was a horrible bitch who hurt her patients. Becoming worse was the last thing I wanted, and having read so much bad on the internet I made up my mind to withdraw from the course two days before it started.

Negative descriptions on the internet made me worse

The ME Association is also negative to LP, and I have read several times that “those who get well through Lightning Process never had real ME to start with”. I think this is unfortunate, given that everyone who suffers from this illness knows how difficult and hard it is, and it hurts to read that LP is nonsense. I have been called lazy and attention-seeking several times this year, but it is especially hurtful when it comes from people who suffer from the same illness.

I now realise that I wouldn’t have recovered and would just have become worse if I had believed what I read. Those who write such things on the net deprive others with the same illness of the right to recover.  To escape from the worst thought patterns, I had to stop following the ME Association, since what I read made me worse and emphasised to me that LP would never help me.

After everything I had been reading, I felt sure it wouldn’t work

My parents worried about me and wanted me to get better. Live called my mum and shared a few stories of people who had got better, saying that young people often recover very quickly. Mum was convinced that this was right and wanted me to do the course. I reluctantly agreed, but hung on to my negative attitude. After everything I had been reading, I felt sure it wouldn’t work. Many people believe ME/CFS is not a psychological illness, but after this course I have learnt that our thinking has a great deal of influence on us. I realised that while I was ill, I ended up in a viscous cycle of negative thoughts and a strong focus on disease.

You will not be doing the job on your own

The purpose of LP is to put away this negative thinking and focus on the disease, and train up your old, positive thought patterns until they become automatic. The LP is a three-day course; it is not a treatment or therapy. It is training, and you will need to do the work afterwards. What I read the most about prior to the course was that LP is not a treatment, and that it is your own fault if you don’t get any effect from the course. This frightened me, but I have now seen that it’s not like that. After all, it is your body and your thoughts, and so you must of course have the motivation to make good changes in your own life. Apart from that, you will receive all the help you want from your LP coach, and what you learn, will stick straight away. If you struggle with something, you will be given help. If you do get stuck, then there is something you are doing wrong, but the negative talk on the internet makes it look like all hope is gone if you are stuck. You will always be given help, and you will not be doing the job on your own.

Why should some ME patients deprive others of a chance to get their lives back?

I now realise that those who are writing negative things on the internet are themselves stuck in a vicious cycle, and they may be writing the way they do because they follow the negative thought patterns you learn so much about in LP, merely looking for faults, as I did myself when I withdrew from the course. If I had listened to those people I would not have recovered. I would still be in bed. Why should some ME patients deprive others of a chance to get their lives back?

I would also like to add that Live Landmark is not the horrible person I had read about on the net. I was somewhat anxious when going to the course, given the impression of her that I had received on the net. But at the course I encountered the friendliest and most jovial person I have ever met; no one could be scared of her. Having read her book after the course, I learnt what a fantastic and kind person she is. She has had this terrible illness herself and recovered, and now she is dedicating her time to helping others. The woman I thought was an evil witch has in fact saved my life. I am eternally grateful.

The fear is gone

It is now six months since I did the course, and I have a whole new life. My life now is even better than before I fell ill. I can do most things, my head is clear and I am hardly ever ill. While I was ill I was unable to read or watch a film, but after the course the bookworm in me has woken up and I have read many books. I have managed to climb stairs without having to lie down afterwards, I have managed to be social without it ruining me, and I have even been to the cinema without having to return home before the film even started because the bus trip wore me out. My chronic headache has vanished. I can wash my hair by myself. I can go for short walks. I can spend time with my family without getting exhausted and irritated. I can cook a meal.  Those little things have totally changed my life, and I am so pleased to call myself fully recovered. I feel as if I can do anything, and I am no longer afraid. My fear of the future, of pain and treatment, of never fully recovering – those fears are completely gone,  and I am deeply grateful. I am now attending school full time, and I feel sure LP will help me through school. I am so incredibly pleased that I didn’t believe what I had read on the net, and I hope I can help others by sharing my story.

Lea was 18 years old when this story was first published.