All those “good” pieces of advice!

My teenage daughter suffers from ME. She’s not able to go to school, participate in leisure time activities or to have a social life. There is no cure, no quick fix or medicine. It’s possible to give some symptom relief, but nothing that really helps. And it’s not possible to predict any prognosis for recovery.

ME is not a pleasant diagnosis to get, but it was a relief when the experienced neurologist said “This is an absolutely classic case of ME.” Then we got a name for all the strange symptoms she was experiencing. She had heavy flu symptoms – fever, chills with shivering and blue lips, body aches; dizziness and unsteadiness; audio and photosensitivity, abdominal pain; nausea; sudden “outburst” of reading and writing difficulties; problems making even simple choices; periods when she couldn’t do anything herself; coma-like sleep from which it was impossible to awaken her; failing immune system and – not least – increasing symptoms after the smallest activity.

It is no better than it sounds, but she is not among the sickest. Fortunately. My daughter is mostly housebound. It means that she, like many other children and young people with ME, unfortunately, has fallen out of school. It was hard to realise that she was unable to attend school. I myself have high education and believe that education is important. But she cannot go to school because it makes her worse.

As the mother of a seriously ill child, I often find myself in situations where I have to defend both me and my daughter. And I get lots and lots of good advice.

Good advice 1: (from a doctor) “Stay away from patient organizations. They can make you believe that ME is a real illness.”
Well – for us who have watched the girl closely in recent years, there is no doubt that this is a most genuine illness. And patient organizations have a lot of important empirical knowledge that we benefit from and that makes life easier.

Good advice 2: (from a school nurse) “But why doesn’t she want to go to school? Sometimes you just have to say – listen girl, it is important that you go to school and do your homework, everybody has to. Think of all you’re missing out on!”
Normally I – who myself am a teacher – would have agreed in this, and this was what I tried to do until she for a period became almost 100 % bedridden. Healthy children go to school. But with ME, that’s rarely possible, even if they want to. One of several reasons is that there is all too much auditory and visual noise there. This is perceived as a barrage against the senses.
She gets sicker after just one lesson. It can take anything from 1-2 days to 1-2 weeks to get back to the “fitness” level she was at before that one hour. And – I can guarantee that she thinks of everything she misses out on. So do we – her relatives.

Good advice 3: “You need to get her to start exercising. Everyone gets better from fresh air and a good walk! Or physical therapy?”
Yes, almost everyone feels better from a walk and fresh air. But not those with ME. They can go for a little walk when they know they have the capacity for it, but if they force themselves or are forced to do so when they are too ill, the result is heavier symptoms. And this may be both severe and prolonged.

Good advice 4: “Have you tried the Lightning Process ( LP)? I read about a girl who had been on a three-day course, and she was cured!”
It’s great that she was cured! But, no. My daughter has not been, nor will she attend such a course . LP seems to be a quack treatment without research foundation. The mind is important to everyone, and LP is probably great for many who need to work on their thought patterns. However and unfortunately, we know people whos ME have become significantly worse after LP. They do not want to come forward in public because they also feel ashamed for not being able to think themselves well and healthy. Moreover, it is expensive. Some earn a lot of money on this.

Good Advice 5: “What, doesn’t she get any treatment? You have to DO something!”
We have done quite a lot. First we tried the GP, who for three years only came with “good advices” like the ones I try to answer here, as well as offers of “happy pills”. Finally, we switched doctors, and was heard! All possible samples were taken. The girl was sent to a lot of specialists, and ended up with an ME diagnosis. But getting the diagnosis did not lead to treatment, as there is currently no curative treatment for ME.

Good advice 6: “I know of someone who has been to rehab. Have you tried it?”
Yes, we have. Four weeks at the only rehab facility in the country welcoming youth with ME – or CFS as they insist on calling it.
It was a nice break from the monotony of everyday life at home. Most people who worked there were super, and because everything was so well organized with everything in one place, she managed a great deal more there than at home. But it was no cure! Moreover, some of them were so hung up in their belief that the youngsters lacked motivation that it seemed as if they failed to grasp that my daughter is super motivated. Also it was too ambitious, leading to increasing symptoms afterwards.

Good advice 7: “I’m sure it would help to lose some weight…”
Probably. But she eats very little. Small portions, healthy food made from scratch to avoid hidden salt, sugar and fat. The problem is that she is not able to exercise. It takes very little to maintain your weight when you are so passive. In addition, the chaos in several hormone systems play a major role here. Much of the weight is also due to inflammations and water retention. This is one of the few things the doctor has been clear about.

Good advice 8: “She needs to talk to someone. Does she see a psychologist?”
Yes, like many other children and young people with ME, she was sent to a psychologist. The psychologist found nothing wrong with the girl, but the talks were still fine for assistance to accept the status quo.

Good Advice 9: “Think positive!”
Yes, if we had not been thinking positive, I dare not think what would have happened. Our positive and optimistic mindset is what gets us through the days.

My daughter has always had a strong desire to be like all other children and youngsters, to participate in school and leisure time activities. She misses her friends, going to school and training, even homework and tests! Then, having to listen to advices about forcing herself to activities, and having to answer to them, is an added burden.
But please show that you care – if you know someone with ME. Just be a little careful with good advices. It’s better if you ask us to tell how it’s really like living with ME. But listen to what we tell instead of interrupting with good advices. And if you’d really like to help, ask us what we need. Living with ME in the family means we cannot do everything we would like and need to. We have to vacuum when the patient is out occasionally, and we may not be able to take the car to service. See?

Written and translated by @fryvil