Being the mother of two children with ME is both demanding and lonely. But this is not the most difficult part of it.
We have translated an interview from Norwegian paper Laagendalsposten to English.
Click to see Norwegian original: Gro har to barn med ME.
“Living with two bed bound children”
The story of how life changed started four years ago, and Gro Mesna Andersen does not know how long it will last. She is the mother of two children with ME, the “mysterious” illness that many has opinions about, but nobody really knows the cause of.
There are no effective treatments for ME. – We are waiting for the research. The dream is an effective treatment that works, Gro says.
Meanwhile, life is put on hold, and daily life with soccer practice, skiing, tennis and band have gradually been replaced with taking care of two bedridden children. The house is calm and quiet. The children must rest before and after any activity. Håkon (15) and Karen (12) is intermittently bedridden and in need of care. They become sicker from the smallest effort and are in no shape to go to school.
– What really happened?
During the winter of 2010, Karen was ill several times with a fever and flu-like symptoms. Gradually Gro and the children’s father, Inge, suspected that there was something more. Eventually Karen became bedridden and had a lot of pain, headaches, stomach ache and joint pains. It took two years before Karen was diagnosed with ME in 2012, after a long process of observation, doctors and illness.
And in the midst of Karen’s investigation Håkon developed the first symptoms in 2011. Since then he has also been ill, and bedridden much of the time.
– Is ME hereditary?
– No one knows for sure, but many believe it’s about a genetic vulnerability.
The last four years have been difficult for the whole family. But one of the toughest things to witness as parents, is all the things the children miss. That they miss out on almost everything.
– It’s really tough. The children do not attend school, and everyday things like having a friend over must be restricted. If not, they get worse. It is not always easy to set the limits, as your child really want to meet friends. You need to “put the brakes on” on your child.
–ME is a “controversial” illness. Is this noticeable for you, do you meet prejudices or lack of understanding from people?
– Yes, it’s a pretty stigmatizing disease, and one that many has opinions and believe a lot about. We noticed particularly during the period of investigation that the health care system generally lack expertise in ME. Today, both kids are seen by a pediatrician in Oslo who also sees several other ME patients.
– Many think it is all about the mental state, as school refusal or depression. But that had actually been easier to cope with. Then one would at least have known what it is, and that there is a treatment. Not so with ME.
Today, both children are exempted from the ordinary duty to attend school, and have a few hours a week in a small group and homeschooling instead.
– Was it difficult to realize that the kids could not go to school?
– Not really, because it happened so gradually. When you know how ill your child gets from going to school, you see that it is the right thing to do. You do not send your child to school when he or she is sick. But it is clear that some people do not understand this, and only see that the parents do not send their child to school.
When you know how ill your child gets from going to school, you see that it is the right thing to do. You do not send your child to school when he or she is sick.
Being a parent of a child with ME can also be lonely. Today Gro is working part time, and receive “care benefits” to stay home with the children.
– I’ve given up a lot, and it feels a bit like life is on hold.
With help from family, they must ensure that there is always someone at home. But “care benefits” is only a limited benefit from NAV (Norwegian welfare system) that must be applied for regularly. The concern for whether they are granted this allowance for the next month is always there.
– Without care benefits I would have to take unpaid leave from work. To leave them at home alone is not an option.
She believes this is one of many examples that people with ME often fall between two chairs. That it is a special disease. That there is no benefit that makes it possible to care for your child, while at the same time having the financial security of more than a few months at the time. The future is uncertain enough as it is.
– Some get better, while others may be sick forever. We do not know.
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Part two, interview with the Secretary General of the ME-Association:
– In Kongsberg they understand!
She is Secretary General of ME-foreningen (the ME-Association), and almost daily in touch with relatives of ME patients across the country. Gry Finstad Molland from Kongsberg says there is one particular issue that most families and ME patients mention:
– The greatest challenge is that they are not taken seriously, they are not believed, both in schools, health professionals, family and friends, says Molland.
The Secretary General is often in touch with relatives.
In relation to children and young people, Molland’s impression is that the city of Kongsberg stands out positively. – Both schools, kindergartens, child care and PPT (special education services) in Kongsberg municipality seem to be good at both follow-ups and preparation for children and adolescents with ME. The municipality have understood something many other municipalities have not.
– And why is that?
– The fact that ME is a physical illness, and that pacing and energy are two important keys. In addition, Molland’s impression is that they listen to the relatives and the sick. Many of the people she is in contact with tells her about various challenges in the health care system and in the community. Because the disease, which cannot easily be identified with a blood test, study can often be long and tortuous. – “You cannot possibly be this sick,” people think. But they do not see the way the patients collapse after having mobilized all their strength, says Molland. She says that inadequate skills and understanding of the disease, both in the health care system and the various agencies in the municipalities, can make it difficult for the patient and their next of kin. One of the agencies Molland speaks highly of, is The Educational and Psychological Counselling Service (EPC) in Kongsberg and Numedal. They are currently following about ten children and adolescents diagnosed with ME, all of whom have different degrees of being exempted from mandatory schooling.
– The local EPC gets praise for monitoring and facilitation for these children. What do you do?
– We show respect for the families’ situations and meet them where they are. Especially in cases of ME, all are in a very vulnerable position, says CEO of EPC, Asbjørn Langås. Our role is to facilitate and guide the school, pupil and parents.
– Especially in the early stages when no one knows what this is and the child does not go to school, it is important that we react swiftly and establishes a good working relationship with other agencies, says DPI advisor, Lars Husby .
– Do you experience that ME is a diagnosis many schools find it hard to deal with?
– Discussions of the diagnosis belongs in the health care system. Our focus is the teaching and training, and convey that there are many possible ways and adjustments towards an education. Although it is done in very small steps, says Langås.
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Text and photos: Jenny Ulstein/Laagendalsposten. To English by the ME mums.