“It has been important for me to feel ownership to my own process. I’ve been my own coach all the way”

I got ill in 2008 and got the ME diagnosis in 2009. At the time, I was 39 years old, divorced, had two children and was working full time. I lived an active life before this. I sat on boards, was parental contact, trained at both the fitness center and with active cycling.

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Torill Sorkmo

I got divorced in the fall of 2006. In the summer of 2007 I broke my collar bone in a bike race. During that same period I moved, and in the autumn I had two operations. In the winter of 2008 I had mononucleosis, but thought it was a common cold so didn’t take any notice. During the spring and summer of 2008, I had a constant feeling that I was coming down with a flu, I had a sore throat and felt slow and tired. I was completely or partially on sick leave due to stress symptoms several times during this year. Still, I did three bike races that summer.

Fought the symptoms

I tried to fight all the symptoms, but the more I fought and worried, the worse I got. I eventually struggled with sleep, concentration, memory loss and nausea. I was first diagnosed with “stress”. I went to a gestalt therapist and was sent to a psychologist to find out whether it was depression. I was declared mentally healthy, I rested, I got better and went to work again, and again. Every time I got a little better, I went back to work, a little ashamed of making so much fuss and being so weak.

I tried to fight all the symptoms, but the more I fought and worried, the worse I got

But then in March 2009 it got worse. I was in such a bad shape at work that I didn’t understand what my colleagues were saying to me. I realized I just had to go home. I had nausea, dizziness, a feverish and aching body and brain mist. The diagnosis ME was given in December 2009 by Dr Paul Kavli in Oslo.

“I have to fix this myself”

I was sent home from the GP without any offer of treatment, little knowledge of the diagnosis, poor statistics and nothing to hope for. I did not want my two children to experience me as ill, and I did not want to be ill, and that was probably what motivated me to look for a way out. I realized I had two options; to give up and just “have ME” or to fight against it. “No way am I going to just sit at home for the rest of my life” I thought to myself, and thus my way back started.

The only thing I could find about ME online seemed to be either depressing (the ME-association) or miraculous (LP) – there was nothing in between. I therefore decided that “I have to fix this myself” and I started reading. I read everything from self-help books to psychology. I also read Live Landmark’s book about her illness and way back.

I could feel how this either drained or filled me with energy

Eventually I seemed to see a pattern in the different theories. Especially an exercise in one of the books which made an impression: Here I had to first think of everything that was sad in the world and then think of everything that was good. I could feel how this either drained or filled me with energy. My solution was to use the power of thought and to self-medicate myself with endorphin-happiness hormones.

I realized I had to make myself happy. I tried to constantly fill up with joy, laughter and positivity. I also found mindfulness as a technique that helped work the stress out of my body. In this way I gradually got back to work, and in the spring of 2010, I was working fulltime again and instantly left the entire ME problem behind me.

Back to old patterns

But I discovered that getting healthy was not the same as staying healthy. In February 2014, I had sinusitis and ended up being on sick leave for over a month due to ME symptoms. In October 2015 I was on partial sick leave, then in March 2016 I went back to working full time as I felt a little better and felt bad for all my absence at work. In May 2016 I became even worse, in addition to nausea, dizziness, aching and feverish body and brain mist, I now also had muscle pain.

I therefore tried to be a good ME patient

I hadn’t noticed that I had slowly but surely slipped back to the same thought patterns after the sinusitis. I thought “this time, I’ve got proper ME”. I therefore tried to be a good ME patient, I joined the ME-association, ME-forum online and signed up for ME-courses. I cheered for the doctors Øystein Fluge and Olav Mella and their research on the drug rituximab in the hope that a pill could help me out of ME.

Defined by the disease

Nevertheless, I tried to make the best of the situation and to have as many good moments as possible. So, I became slowly, but surely, a little better and the muscle pain let go.

The ME online forums contributed to defining me as “ill”

As I got a little better, I was also becoming increasingly aware that the ME Association and the ME online forums contributed to defining me as “ill”. And in “being ill” there is much of what I perceive as “sacrificial energy”. You “become” your disease, the disease controls everything, it defines you. You are passive, powerless, scared and with this attitude you give away the power and responsibility of your own life. I think this way of dealing with illness is very energy-draining, almost paralyzing.

This way of dealing with illness is very energy-draining, almost paralyzing

I eventually became very frustrated by this feeling of powerlessness. When I became aware of this, I knew I had to do this process on my own again.

Became much more aware

In July 2017 I took hold. I quit the ME course, I canceled my membership in the ME Association. I refused to be treated like, or define myself as, “ill” anymore.

Once again, I brought out meditation, mindfulness, visualization and even more endorphins. But I also realized that it’s not enough to know the technique of getting away from the ME condition if you return to the same way of life every time. I became much more aware of how I treated and thought about myself in everyday life.

Society expects “full steam ahead”

My way into ME is not unique. Low metabolism and high stress levels in the body topped with mononucleosis that was not treated. I didn’t understand at the time that I had a high level of stress in my body. I did not even see that for a period of time I had so much happening in my life, and that all this led to a constant alertness that “got stuck” in my body. It never occurred to me that I wouldn’t handle everything that life sent my way. When I didn’t function 100%, I felt very disappointed with myself, disappointed that I didn’t handle everything the way I felt everybody else did.

This I experienced already during the period 2001-2005 when I had Iron Deficiency and low metabolism after the last birth, without my doctor being able to diagnose it. I took an extra year of maternity leave and slept during the day alongside my son. I thought I was lazy. My solution was to “get a grip” and “set full steam ahead”, it was the attitude I perceived that society around me considered the correct one.

Acceptance without judgement

Important factors towards getting well was for me to accept what had happened without judging myself, really understanding what a high stress level in the body can do, sorting my own values and priorities, and no longer compromising with myself in any areas. It became important to me to be able to treat myself well, without any bad conscience. This Autumn and winter have also been used to go for long walks, to simply get my body going again after two passive years. In March 2018 I started to work again, and I gradually started with both dancing and volleyball, activities that give me a lot of pleasure.

It became important to me to be able to treat myself well, without any bad conscience

Ownership

In hindsight, I might have saved a lot of time and money taking a Lightning process course ten years ago, but it has been important for me to feel ownership to my own process. My way hasn’t been a quick fix, and I’ve had to be my own coach all the way. It has been a long, demanding but educational journey, and I am still learning more and more about myself and how these mechanisms work.

It is very important that Recovery Norway continues to tell stories about people who become well again. It gave a lot of inspiration and hope in my process. Likewise, I hope my story can give hope and understanding to those who need it.


This text was first published on Recovery Norway’s Facebook page in December 2018. Torill Sorkmo was 49 years old at the time.

AdultsFemaleME/CFSMindfulness/meditationStress managementOther methods