When agony divides life into canapés.
Susanne Wüste takes strong medication every day for decades. The pain remains. In Germany there are at least three million chronic pain patients like her. How do you live with it?
Susanne Wüste can’t just go to the supermarket and spontaneously shop for dinner with her family. She has to plan: How much can I put in the shopping cart so that I can lift the bag into the car? Can I sit down in the shop in between or, if necessary, on the shopping trolley? Without such small anchors she cannot cope with her everyday life.
If she goes for a rehab swim, she waits in the pool after the course until everyone else has long since left. She has to be sure that the bench is free and that she can dress sitting down. Otherwise it could be that she gets sick with pain: she gets dizzy and black in front of her eyes.
Susanne Wüste is 48, but she leads the life of an 80-year-old. She has not been able to work for twelve years. When she goes out on the street, she often carries her rollator with her, which she sprayed with purple so that she doesn’t find it so terrible. Most of the housework – washing laundry, shopping, vacuuming – has to be done by her husband and her 17-year-old daughter.
Guilt is a phenomenon that has determined the life of this petite blonde woman since she was a teenager: chronic pain. Almost every day, she says, she has endless pain in her back. Only with a cocktail of eight different medications plus physiotherapy can he keep himself at bay.
He. The pain. The thing that has become the determining theme in her life, the constant companion. Never completely gone, sometimes only very quietly in the background, but often, much too often, than the subject all her thoughts revolve around. “I have to plan my whole life after the pain,” she says.
Four percent of all Germans live with severe pain.
Anyone who has ever had an accident, cancer or any other serious illness can understand what it feels like to live with severe pain for weeks, perhaps months. However, the certainty that things will get better sometime helps. But what if it doesn’t?
There are people who live permanently with pain – and for whom there may be no logical explanation at all for its occurrence. 3.25 million patients with severe, permanent pain are said to be in Germany, the health insurance company Barmer GEK reported last week. That would be four percent of all Germans.
Do you want to live on at all with severe pain that never goes away? Probably many of those affected take their own lives, there are no estimates. But Susanne Wüste still has her courage to live, despite decades of pain.
It started when she was 17, with a series of witch shots. Gradually her entire musculoskeletal system was affected, back, knees, feet – everything had to be operated on. In the meantime, almost all the physical ailments have been repaired by surgery. And yet the back pain has remained because her holding apparatus is over-mobile.
If the pain is extremely severe, she cannot think of anything else. Nevertheless, she has learned to live with it. “When I have a day when I almost don’t feel it at all, I appreciate it much more than other people,” says Desert. The other day, at carnival, she had such a day. There she was celebrating with her friends.
For a few hours she could just stand in the pub, laugh, dance a little. It’s the same with walking. “I used to lie in my bed upstairs in our bedroom, look out the window and see women walking in the woods. Then I thought: “Instead I am lying here and life outside is passing me by”.
At some point she found out: She can walk with ski poles – of course not as fast as others, and even if it hurts with every step. “Biting through, doing it anyway, being proud of myself, that’s what makes my life a little bit different,” she says.
The number of unreported cases is high.
The patient organisation “Deutsche Schmerzliga” (German Pain League), whose Vice President is Ms. Wüste, considers Barmer’s estimate of a good 3 million pain patients to be far too low. They refer to Europe-wide studies according to which 23 million Germans are said to suffer from chronic pain. The number of unreported cases is particularly high among elderly people.
How many people are affected is important because the number of pain therapists who treat them also depends on the number of patients. Currently, 1882 therapists are licensed nationwide. With 3.25 million people affected, each of them would have to treat 1726 patients. About 30 per day.
But that is completely unrealistic, explains Wüste, because the patients sit with the pain therapist for much longer than with another doctor. The discussions are not only about medication, but also about physiotherapy, mental health and other forms of treatment.
Health economists call such a situation “undersupply”. Patients like deserts show what the cumbersome word means in everyday life. During the conversation at the large dining table in her living room, the trained nurse has to change position from time to time: from the chair to the Pezzi ball, standing, back to the chair. “I wake up in the morning and feel like I’ve been hit by a truck,” she says. Almost her entire back is cramped, “blocked,” she says.
She then lies in bed, can barely reach for the bottle with the strong additional painkiller that is always on her bedside table, and waits until the pain subsides to such an extent that she can get up. “It takes hours until I’m showered or dressed, I have to lie down for a short time in between.” It is impossible to drive to her pain therapist in this state. She lives in a small village in the Bergisches Land, the doctor’s office is 54 kilometres away in Cologne.
The long wait for a doctor’s appointment
But even if she did, the doctor couldn’t treat her without an appointment. His practice is totally overcrowded, says patient Wüste, “And I’m still in a comparatively good situation as far as my medical care is concerned”.
Twice a week she sits on the phone and consults others with pain patients. She keeps hearing the same story about people who don’t find a pain doctor. “Especially in the countryside and especially in East Germany there are patients who wait a year for an appointment.
But that is fatal, she says. For chronic pain patients, the right doctors are the most important factor in not losing their courage to face life, i.e. those who take their time, who constantly readjust their medication and who know their way around. That is why their organisation demands either more pain therapists or better trained general practitioners.
At the National Association of Statutory Health Insurance.
Physicians in Berlin – the authority that significantly plans how many physicians of one specialty there are where in Germany – one sees things differently. Deputy chairwoman Regina Feldmann says that the care is not bad. “The general practitioners in Germany are extremely well trained – also for caring for such patients.
Of course, a specialist can also treat pain patients, for example an orthopaedist, if he has the appropriate additional qualification. The best way to help patients is for several specialists to work together. In addition, patients have to learn how to cope with their situation. In other words, they should not expect doctors to be able to relieve their pain completely.
She has a recurring dream
Susanne Wüste says in her house in Bergisches Land that she would like to spend a day with Mrs. Feldmann and show her how she and other pain patients live: How long it takes for her to get dressed, how far she has to drive to the pain therapist, how little a normal family doctor can help her or other pain patients with an acute pain relapse. “I think the functionaries see all this through very theoretical glasses.
Sometimes, says Susanne Wüste, she has a dream that keeps coming back: “Then she’s a nurse again, just like in her early 20s. She can then walk down the hospital corridors, help patients out of bed and laugh. And nothing hurts.