“Now our daughter will go out and experience happiness and sorrow – just like other teenagers. She has got her life back”

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Mother of a 12-year-old daughter

I just got home from work. Our daughter is in school, at an activity day (!), and the house is quiet. Now is a good time for me to tell our story.

It is three years to the day since she fell ill, at the age of 12. She had just started secondary school. She had made many new friends and had a teacher she liked. She was very happy at school. During the autumn break, she started to feel unwell. She had a slight temperature and a sore throat. She stayed in bed for the whole week. When school started again, she went to school and came home and rested. She did this for some time. We thought it would pass, but it was like the illness didn’t really let go.

After a month we went to see the GP. I was suspecting mononucleosis, so the GP took some blood samples and we returned home. The samples were negative, there was no indication of illness, so we waited a bit longer. She was absent from school increasingly often. She felt poorly and tired. We went back to the doctor and had more samples taken. Perhaps her body was lacking something? The results came. She had a slight folic acid and iron deficiency. Perhaps that was the reason?

During Christmas, she rested and rested and rested, following the doctor’s recommendation

She started taking supplements and tried to keep going until the Christmas holiday. On Christmas Eve, she stayed in bed until dinner. She ate a little bit but had to rest between dinner and dessert. During Christmas, she rested and rested and rested, following the doctor’s recommendation. Before this, I had considered whether she should do some exercise, to get her in better shape, but this was rejected without any further explanation.

Our daughter was bedridden, unable to attend school. … Staying home in bed did not make her any better, on the contrary it seemed to make her worse

In the new year, we returned to the GP. He thought it might be post viral fatigue syndrome. He referred us to the Outpatient Clinic for Children and Young People at the Hospital of Southern Norway. Meanwhile, our daughter was bedridden and unable to attend school. During my lunch break, I used to drive home from work to feed her and keep her company for a while. During the winter holidays, we talked about how staying in bed just seemed to make her worse. So, we agreed that she should try to go to school for a few lessons a week, and that I would take her and pick her up by car. It was a difficult period for us. We had to combine the situation at home with my management position where I was responsible for 35 employees and with looking after our other children, who were 14 and 2 at the time. I kept going, but in retrospect I see that I was really naive during this period. I didn’t quite understand what we were up against. Had I understood the progression and extent of the illness, I think I would have made some different choices and prioritised the needs and health of my family and myself. At the time, although we’d been in this nightmare for 6-7 months, I still thought it would pass.

It was terribly lonely

In March, my daughter was to go for a three-day stay at the hospital’s Paediatric and Adolescent Unit. Strange how you can look forward to a hospital stay! I was hoping to get some more answers and perhaps some help. It was good to just be a mum for three days and to talk to professionals about my worries. It was terribly lonely to be the one to look after her and care for her, while also reading about the topic of fatigue, trying to find something that could work and point us in the right direction. At the hospital, there were new rounds of blood samples, consultations with doctors, physiotherapists, psychologists, social workers, ergonomists and SMI school (the hospital school). The three days in hospital did not yield any further results than a confirmation of her condition. The doctors seemed critical of my daughter’s dependence on me. Most of the time, she turned to me for confirmation and help to answer all the questions she was asked. She was now 13, but still a child. When the doctor remarked upon it and asked me to work on her independence, I felt guilty about the situation we were in. Yes, she had needed me more during these months. She needed help to put her condition into words, but she was very ill.

The focus was on saving her energy, rest, and facilitation. Our daughter looked so little, sitting around the table with 7 medical professionals and her parents

She was allowed to take a taxi to and from school. Other than that, there was no follow-up but one cooperation/final meeting in May, where the GP and school were represented. The focus was on saving her energy, rest, and facilitation. Our daughter seemed so little, sitting around the table with 7 medical professionals and her parents. It was a conversation that went above her head and I tried my best to involve her in the talks.

Except for that, it was the good cooperation with the school that kept us going. We are incredibly grateful for the school’s approach and follow-up. They took us seriously from day one, they made adjustments and reassured us that we would get through this together. To make a long story short, the whole of Year 9 was spent walking up the so-called stairway (which I had found out about myself) of adapting, stabilising and gradually ascending.

Although her fatigue did improve, she struggled with headaches and dizziness. We tried consulting physiotherapists, two of them, a naprapath and an osteopath, but without results. We thought it had nothing to do with fatigue and tried to treat it separately. After a while, we requested a new hospital assessment and the GP issued a new referral, but there was a three-month waiting time. At the end of Year 9, our daughter was attending school almost full time and passed all her classes. The only thing that was not 100 percent was her social life. She saw a few friends now and then and attended some birthday parties. However, she was content. She kept in touch with her friends on social media and was ok with that.

When she started Year 10, she wanted to go to school full time. She also wanted to take ballet classes twice a week, despite her persistent ailments. We were happy things were going so well, and about the initiative our daughter was showing. Of course she was allowed to do what she wanted! We started and were in good spirits. A month passed, then she started to feel the strain. We skipped a ballet class now and then. The hospital appointment in September gave no results. We were told that she needed to put on some weight, as her curve had stabilised, but there was nothing to be done for her headaches. Increasingly often, she came home from school after a few lessons with severe headache. She found it difficult to concentrate.

I applied for attendance allowance from NAV

We reacted quickly to the negative development after she tried to readjust. We reduced her school attendance and other activities. But we could not stabilise her condition. She kept deteriorating. By October, she no longer attended school. She kept to her bed and needed full-time care. I realised that this time I had to throw in the towel. I could not take another round of shuttling between home and work. I had to prioritise my daughter and the rest of the family. I applied for attendance allowance and was granted the full allowance.

In December, we tried to let her attend one lesson twice a week. She managed to stay for one but was completely exhausted the following days. I was deeply frustrated about the development and again we went to see the GP. And again he referred us to the hospital. During this period, I was physically ill. Several evenings, I vomited thinking about our daughter’s future. I developed Graves’ disease, an autoimmune disorder caused by long-term stress, probably as a result of poor sleep and not taking sufficient care of myself. The school also started to show concern. The school that had been so calm and certain we’d get through it! What were we going to do now? Previously, I had followed the GP’s advice not to read everything I came across about the illness, but now I was on Google for hours, in pure desperation. There must be somebody out there who has recovered, who can give us hope. Then I found something…

At the end of January, I accompanied my daughter to the Outpatient Clinic for Children and Young People at the Hospital of Southern Norway. I told them how my daughter spent her days and about her ailments. The doctor looked compassionate. She nodded sympathetically but said: Sorry! There was nothing she could do. At the verge of crying, I told her that I had read about a clinic for stress medicine in Fitjar that had had good results with ME patients. Eight out of ten people had improved their quality of life, I’d read around Christmas time. This was news to the doctor. She did not know anything about it. I asked if she could consult another doctor at the hospital, who I knew had experience with ME patients, and perhaps get a referral for my daughter? She said she would do that, and we went home and waited for a reply.

At the verge of crying, I told her that I had read about a clinic for stress medicine in Fitjar that had had good results with ME patients

A few weeks later, we received a letter from the hospital. It did not mention my question, but said that, after having consulted another physician, they had concluded that no other treatment or follow-up than the current one was recommended. I didn’t know whether to laugh or cry. This was ridiculous! What treatment and follow-up were they referring to? All I had experienced throughout the illness was loneliness and powerlessness. What they did offer young ME sufferers was a number of courses on how they could live with the illness, how they could save their energy and how the school could facilitate. The problem was that most of the young people were at home in bed in dark rooms. They didn’t manage to attend, so parents and siblings attended instead.

What treatment and follow-up were they referring to? What they did offer young ME sufferers was a number of courses on how they could live with the illness, how they could save their energy and how the school could facilitate

I did not have the energy to fight the hospital’s decision. I decided to order Live Landmark’s book “Vekk meg når det er over” (Wake me up when it’s over). I saw that there was a clear connection between her theory and that of the LP course and the clinic in Fitjar that I had read about. We read the book together, with me reading out loud to her. Both my daughter and I are sceptics, critical thinking is important to us, but I told her that, actually, I know a thing or two about this. I work with children and I know how the brain can react to stress and trauma. There’s a connection between this and the thinking behind Trauma-Informed Care. It strengthened my belief that there is a connection between the body and the mind, and that it is possible to influence it and take control of it. I asked my daughter if I could call Live to discuss the possibility of attending a course.

The turning point

That was the turning point. I called Live and Live called my daughter. She had to check that she was motivated and wanted to attend an LP course. I still don’t know what they talked about, but it must have been a long and good conversation. That evening, our girl came down to the living room, and sat with us for the first time in months. We watched TV and had a lovely evening. Hope had been instilled in her, and in the month prior to the course, she was feeling better. I took her shopping with me and we could fill our days with more activities. I was anxious about whether she could manage the train journey and a three-day course, but Live reassured me. She would manage. On a sunny winter’s day in February, we took the train to Oslo. That afternoon we went out for dinner and to the cinema and we had a lovely time.

The next day, we boarded the train for Lysaker. We were both very excited, what would happen next? For three days, we spent time with people who were in the same situation as us, people who openly shared their experience and stories and that all had one common goal and expectation: TO SEE A CHANGE! It was a positive experience for both of us and the train journey home was not exhausting for our daughter, just boring…which we can live with!

However, now we had to put in the work. We were home and left (almost) to our own devices, but we had brought a set of tools with us that would help us handle the challenges. Furthermore, we had been made aware of what sustained the symptoms and I realised that both the GP and I had contributed to this. The doctor had contributed by giving neither explanation nor hope and I had contributed by wanting to alleviate the pain every morning. How are you feeling today? Did you sleep well? Are you in pain? Do you want something for your headache?

Furthermore, we had been made aware of what sustained the symptoms and I realised that both the GP and I had contributed to this. The doctor had contributed by giving neither explanation nor hope and I had contributed by wanting to alleviate the pain every morning

I find that our daughter is handling the process very well, although I cannot see what she’s doing. I have to trust her and be there for her when she needs me. We fill our days with as many good experiences and sense of mastery as we can. Redecorating her room became a key focus. We paint and rearrange the furniture. This is a new start! School has also become a part of daily life again, but gradually. We will not rush it this time. She must feel sure that she can cope. The follow-up from the course helps us keep our focus, but some days are more difficult than others. It’s important to keep up the spirit, to know that there’s a new day tomorrow and that it will be a good one.

The illness has taken a stronger hold on us than her. In recent years, it has been such a big part of our lives. For years, I have just existed for another person. I need time to find myself again and our family has to reconnect

With a few exceptions, our days have been good. She now has a life that she can fill with whatever she wants. She has started upper secondary school and is very happy there. The illness has taken a stronger hold on us than her. In recent years, it has been such a big part of our lives. For years, I have just existed for another person. I need time to find myself again and our family has to reconnect. Her little sister can only remember that we had to be considerate because her big sister was ill.

I find it difficult, difficult to accept the lack of follow up, difficult to feel safe again and difficult to trust the system. I’m really happy that I had the courage to disregard the recommendations we got, that I trusted my gut feeling and common sense. I could not accept the advice of endless rest, saving her energy and other limitations imposed on her. That road would have led to my daughter becoming disabled at a young age. Is that what the health system wants for these teenagers? I just couldn’t accept it. I couldn’t believe you could get energy from constant rest, we had to get her out of bed! I think it will take some time before we get back to normal life. We have to get used to our daughter managing and coping with things on her own. She no longer needs others to manage everything for her. Now she must go out in life and experience happiness and sorrow, the ups and downs of life, and gather her own experiences, just like most other teenagers her age. She has got her life back.

Children and adolescentsFemaleParentsNext of kinVery severe ME/CFSLightning process