«When mummy cries, I cry too»
His mum had rheumatism. «And Firomila ...» For eight-year-old Louis, this word is unpronounceable. But he knows exactly what it means. «Mummy is in pain. Every day.» They are often so severe that Ramona Keller can't get out of bed in the morning. Then Louis and his sisters Selina, 11, and Noelle, 9, get up on their own. They get dressed, have breakfast, pack their snack boxes and go to school.
Axial spondyloarthritis and secondary fibromyalgia syndrome: this is Ramona Keller's diagnosis. In simple terms, spondyloarthritis - also known as ankylosing spondylitis - is a chronic inflammation of the spine. The inflammation triggers bone growths which, in the worst case, lead to stiffening of the spine. The pain spreads from the back to the chest and neck. In addition, other joints such as the shoulders or knees and tendons can become inflamed. According to Rheumaliga Schweiz, a good 70,000 people in our country suffer from this syndrome.
As a result of ankylosing spondylitis, Ramona Keller suffers from fibromyalgia. She herself calls the disease a «chameleon». Because just as her son cannot pronounce it, most people - including doctors - cannot grasp it. The chronic muscle pain repeatedly occurs in other parts of the body and has numerous side effects such as exhaustion, sleep disorders, stomach, intestinal and heart problems. There are no reliable figures on the frequency of the disease. According to the Rheumaliga, estimates vary between 40,000 and 400,000 people in Switzerland. Seven times more women than men fall ill. Most of them are middle-aged.
«What am I doing to my family with this illness?»
Ramona Keller was not even 30 when the pain started. «My GP said at the time that it couldn't be a rheumatic disease at that age. And I also always assumed that it typically affects older people and is hereditary. Nobody in my family has rheumatism.» Silvia Meier Jauch, blogger and ambassador for the Swiss Rheumatism League, also knows that these assumptions are not true. She developed arthritis after the birth of her daughter. «It happens more often in women because of the hormone changes during pregnancy,» she says.
«Like a tornado that swept through my life»
Ramona Keller, mother of three.
Ramona Keller's pain also became more severe after Louis was born. The diagnosis followed two years ago, when she was 35. «Like a tornado that swept through my life,» Ramona describes the diagnosis. She can remember exactly how she stood there, on the banks of the Rhine near her home in Oberstammheim, with countless questions in her head. «What now? What next? What if I end up in a wheelchair?» And: «What am I doing to my family with this illness?»
Ramona Keller is a kindergarten teacher. Since her own children were born, she has been looking after them and the household. Her husband Thomas, a medical technician, earns the family's living. They are a well-rehearsed team, everything works. When the disease strikes, Ramona knows only one thing for sure: things will never be the same again. Because the most important characteristic of a chronic illness is that it is incurable. Its course is unpredictable. At best, it can be kept in check with medication. In the case of rheumatic diseases, this is usually low-dose chemotherapy, with all the known side effects. Returning to work when the children are older - impossible. Not only because Ramona Keller would hardly be able to sit as much because of the pain. «I wouldn't be able to take responsibility for the children.»
When children have to manage their own appointments
She also has to learn to relinquish responsibility for her own children. At least in part. Her husband helps with homework and takes on more and more household duties, in addition to his 100 per cent workload. When Ramona can't get out of bed because of the pain or the side effects of the medication, Louis does the shopping and Selina and Noelle do the cooking.
Every child has their own timetable and weekly schedule in their head. They all know when they have school or football training and how to get there. They also manage other appointments themselves.
So Louis stops by the hairdresser on his way home from school, organises an appointment, asks his mum at home for money and goes there at the agreed time. No big deal. The Keller children now take this independence so much for granted that they often shake their heads at their classmates.
«Three quarters of them don't even pack their own snacks,» says Selina. Louis chuckles. «They're pretty stupid. Most of them have something stupid with them. I pack what I like right from the start!»
Although their daily routine is precisely planned, Selina, Noelle and Louis never know what to expect in the morning. What condition their mum is in, whether and how much she has been able to sleep, whether her pain is bearable or not. Or, as Selina puts it: «One day she's easy. The next, she explodes like popcorn.» Then, when the illness or the medication or both make Ramona Keller thin-skinned, when she struggles with her fate and would rather be someone else, she retreats to her room. Or she goes cycling if the pain allows it. The children know that this has nothing to do with them. But they still suffer. «I sometimes think that I haven't helped enough,» says Noelle. And Louis says: «When mummy cries, I cry too.»
No pity, please!
Such a situation is also difficult for Thomas Keller. «I feel totally helpless when Ramona is suffering,» he says. «But it doesn't do her any good if I feel sorry for her.» Pity is the last thing Ramona wants. Especially not from her husband. He chooses the pragmatic route: «I don't let everything get to me like that and just help where I can.» He doesn't need to take time for himself at the moment to read a book. «That might come back later, when the children are grown up.»
At the moment, he is trying to offer them what their mother can no longer do. Ski holidays, for example. Long car or train journeys are out of the question for Ramona, and the cold is poison for her joints. «The fact that I can do this alone with three children makes me a little proud,» says Thomas. On the other hand, the fact that the family has to experience nice times like holidays or trips without mum makes everyone sad. Even visits to the zoo or hikes are not possible with five children. «Things like that are impossible for me to plan, as I never know if, when and how I'll work,» says Ramona Keller. It's sometimes silly when friends tell you about their weekend plans at Europapark, says Noelle. «And I don't even know if I can fit in a little bike ride.»
«It's sobering how many people turn their backs on you when you no longer function as usual.»
Ramona Keller.
Many social contacts also fall by the wayside: «It's sobering how many people turn their backs on you when you no longer function as usual.» So the Kellers do quite a lot on their own. Ramona's parents-in-law step in from time to time. Her own mother still works full-time and her father lives abroad most of the time. She has also never found it easy to ask others for help. «It's a feeling of failure. These days, mums manage a job, children and household, and I can't even manage two of them,» says the mother of three.
Financial support is another matter. «I could apply for Part IV, but I find that difficult. I feel ashamed.» She often simply lacks the strength to fight. For example, to get the costs of the physiotherapy prescription covered, which the health insurance company doesn't want to pay.
Sick parents are a taboo
Silvia Meier Jauch also had similar experiences. «Healthy people can hardly understand that you can be ill without looking ill,» says the blogger. Ramona Keller's children also suffer from prejudice against chronic illnesses. «When someone says my mum isn't ill at all, that she can ride her bike and play football, it makes me angry,» says Selina.
The fact that chronic illnesses in general and sick parents in particular are a taboo is shown by the fact that there are hardly any studies on the subject. There are figures on «young carers», i.e. children who are involved in caring for their parents. Children who are not, but are nevertheless affected by the illness of a parent - as is the case with the Kellers - are not included in most statistics. It is estimated that between 5 and 15 per cent of children and young people in Germany are affected by a parent becoming seriously physically ill during the course of their development.
«We are all more considerate of each other and have learnt to prioritise.»
Thomas Keller
Ramona Keller tries to plan her everyday life around certain fixed points. For example, she organises football training for four to six-year-olds. She also organises her injections around these dates. She gives herself immunotherapy - and is out of action for hours afterwards. She then cooks dinner for the family or makes sure that the children are looked after by her parents-in-law, with whom they also have lunch once a week. Her husband Thomas can now also cook. «That's at least one positive aspect,» he says with a laugh. But there's actually more, he says: «We're all more considerate of each other, we 're more understanding when someone isn't doing so well. And we've learnt to prioritise.»
Ramona, who describes herself as a perfectionist, is hardly bothered by a dirty floor these days. «Every minute I'm well is worth spending with my family. Not with cleaning.» Playing football, jumping on the trampoline, laughing, living. Now. Here. Today. Ramona Keller thinks as little as possible about what tomorrow will bring. "I can't change it. Even if I'd like to sometimes. Life has shown me that everything turns out differently than you think anyway. And it has taught me to make the best of what I have."
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When do social services and health insurance companies pay?
The regulations are extremely complex and vary depending on the health insurance fund and place of residence. In principle, the IV is obliged to cover the costs of treatment for congenital defects up to the age of 20. After that, it is replaced by the health insurance fund.
This also applies to medically employed staff such as physiotherapists or psychotherapists. Health insurance companies are obliged to pay a contribution towards the costs of care at home, but not towards home help. This may be covered by the canton or, under certain circumstances, by the helplessness allowance from the IV or AHV.
Help in the social insurance jungle for chronically ill people is provided by the guide «Chronically ill - what do the social insurances provide». The guide can be downloaded as a PDF from the websites of the Rheumatism, Cancer and Lung Leagues as well as diabetesschweiz and the Swiss Heart Foundation.
Here those affected and their relatives can find help
- Rechtsdienst Inclusion Handicap: www.inclusion-handicap.ch
- Dachverband Schweizerischer Patientenstellen: www.patientenstelle.ch
- diabetesschweiz: www.diabetesschweiz.ch
- Schweizerische Herzstiftung: www.swissheart.ch
- Krebsliga Schweiz: www.krebsliga.ch
- Krebstelefon: Tel. 0800 11 88 11 (Anruf kostenlos)
- Lungenliga Schweiz: www.lungenliga.ch
- Rheumaliga Schweiz: www.rheumaliga.ch
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