Delayed Indefinitely: When Healthcare for People with Complex Chronic Illnesses Never Arrives
This collab story authored by Karina Sturm has first been published in German by Die Neue Norm.
Germany’s healthcare system is like the railways: in theory, there are plenty of connections and a dense timetable of services. In practice, though, there are broken trains, routes riddled with construction, and all too often the train doesn’t run precisely when you need it most. What is a minor inconvenience for occasional sick people quickly becomes an existential threat for people with complex chronic illnesses and disabilities. They don’t just face the same structural problems as everyone else—they also encounter discrimination, gaslighting, and care that ignores the reality of their lives. Blending lived experience, facts, and railway analogies, Karina Sturm shows the barriers people with complex chronic illnesses face in the (German) healthcare system today.
“Please expect an unscheduled delay of 14 years.”
I am chronically ill. Or, as some medical professionals prefer to call it: “all women are a little hypermobile.” Neurologists used to say, “you’re just stressed,” and the disability benefits folks agree, “you’re too young to be sick.” Welcome to the world of complex and invisible illnesses—where you’re lucky if you receive a (correct) diagnosis by retirement age.
I live with a form of Ehlers-Danlos syndrome, EDS for short—an inherited connective tissue disorder that is supposedly so rare it practically doesn’t exist, if you believe certain doctors. But EDS isn’t that rare; it’s largely unknown and ignored among medical professionals. For most people affected, it takes an average of 14 years to be diagnosed with EDS—and for women it takes significantly longer than for men. Men “only” have to make it through four years. At least the railway has an app that shows delays. In the healthcare system? There’s only the oracle in the waiting room. Many patients rack up more referrals and specialist appointments on the road to a diagnosis than some doctors complete in their training rotations. Fifty-eight percent of people with EDS see five or more doctors in the desperate search for answers; 20 percent see twenty.
“Unfortunately, you’re on the wrong train. Please transfer to the psychosomatic line.”
Many people with EDS only learn late in life what caused decades of diffuse symptoms. By then, the train has already left the station. Because of the missing diagnosis—or, above all, the many misdiagnoses—there are serious consequences. In more than two thirds of cases, people receive incorrect treatment, which in almost all cases leads to permanent damage, up to and including death.
During my years of searching for a diagnosis, I was X-rayed so many times that I often wonder why I can’t see through walls yet. I received so many injections that I should basically be a human depot for painkillers, and I tried so many physical therapy approaches that today I can assemble my own training programs depending on the symptoms. Many of these wrong therapies led, in the long term, to my already too-mobile joints wearing out even faster. None of it would have been necessary if just one doctor had thought of EDS. In my desperation, I invested many thousands of euros in useless or harmful therapies. But alongside the financial burden and irreversible physical damage, the worst part was the mental harm: not being believed, or being actively manipulated into thinking I was imagining everything.
“Being this flexible could have advantages for you,” one doctor said about my hypermobile joints, winking at me. “Just do more sports. Young, pretty things like you always have low blood pressure,” another doctor tells me as I sit in front of him with life-threatening complications. “You’re too young to be sick”—the eternal classic, along with “you’re imagining all of this.” I’ve heard both from various medical professionals. After a while, I started wondering whether I’m collecting points for every act of discrimination I experience—and if I reach the bonus level, will I finally get the right diagnosis? Unfortunately not. After the first year I had so many incorrect diagnoses that I could have made a sticker album out of them, and at the same time I was so traumatized by the endless medical odyssey that even today I’m struck by fear every time I have to see new clinicians.
By then, the train of trust had already departed. But don’t worry—the system will happily shunt you onto the psychosomatic line. Maybe it ends at the burnout clinic. Not that I’m mocking mental illness—it brings just as many, simply different, challenges. The problem is confusing physical symptoms with psychological ones, or the other way around, because that creates real damage on both sides. For people with EDS, psychosomatic misdiagnoses can extend the wait for a correct diagnosis to 22 years..
And while I’m waiting in the shelter for the train that brings better care for people with EDS, there are others who don’t even have a platform. One of them is Josefine, whose two children (9 and 13) have ME/CFS—another complex, often invisible, and above all medically ignored illness. The older daughter, Samira, has only had the ME/CFS diagnosis for a year, although she has been severely ill for more than 2.5 years. “Samira’s first symptoms were mainly cognitive. She’d just had a COVID infection and was transitioning to secondary school. Her grades crashed, and in German—where she’d always been good—she suddenly misspelled words she had previously mastered perfectly.” Over the following months, Samira’s illness progressed further. She could no longer go to school, and at some point she could no longer leave her room.
ME stands for Myalgic Encephalomyelitis, CFS for Chronic Fatigue Syndrome. The latter term is misleading, because ME/CFS goes far beyond fatigue. It is a severe neuroimmunological disease that, in addition to exhaustion, comes with many other symptoms such as cognitive dysfunction and orthostatic intolerance, and is characterized by post-exertional malaise (PEM): a massive worsening of the condition after any form of exertion that can last days or weeks and may end in a crash. A crash in the ME/CFS world is a sudden, often delayed complete collapse of physical and cognitive functioning after minimal effort, marked by a worsening of all symptoms.
For over a year, Samira’s family searched for clinicians who would diagnose ME/CFS. Although the young girl met all criteria and all objective tests pointed to ME/CFS, doctors refused to make a diagnosis—or to initiate any treatment. Instead, the family was advised to bring the then 11-year-old into a psychosomatic clinic alone, without parental support. “I can’t understand how this could happen. Everyone knew Samira had ME/CFS, but we were still pressured to leave our daughter—who had lost all physical abilities in a very short time and couldn’t get out of bed—alone in a clinic that didn’t even tell us what would happen to our child there,” says her mother, Josefine.
As with many other complex and poorly understood conditions, ME/CFS is also frequently misdiagnosed as psychological. Some clinicians still mistakenly assume ME/CFS is itself a mental illness, even though numerous studies have refuted this for decades. In Switzerland, people with ME/CFS receive an average of 2.6 misdiagnoses before ME/CFS is recognized. In Germany, it takes at least seven years for patients to be correctly diagnosed. Worse: 90 percent never receive a (correct) diagnosis.
The consequences of misdiagnosis are even more severe with ME/CFS than with EDS, because many patients already have a quality of life worse than that of other chronically ill people, such as those with chronic obstructive pulmonary disease (COPD), multiple sclerosis, or rheumatoid arthritis. Severe ME/CFS is comparable to end-stage cancer. A mild course in the ME/CFS world means you can tolerate only half as much activity as a healthy person. At the other end of the spectrum, very severe ME/CFS often means people can tolerate no external stimuli at all and must endure life at home in a dark room without any communication.
Incorrect therapies—especially those based on “activation,” i.e., physical activity—can cause patients to crash, meaning symptoms worsen acutely and sometimes permanently. Those who might have been mildly affected before a misdiagnosis, and could still participate somewhat in life, may become severely affected afterward and disappear completely from society. “When we were in the hospital, nobody wanted to engage with ME/CFS-specific information. In the end, Samira crashed so severely after a PT session that she couldn’t move her legs at all for eleven months,” Josefine says.
When doctors don’t take symptoms seriously or convince patients that it is “just psychological,” this is referred to as “medical gaslighting.” It is a subtle form of emotional manipulation that leads those affected to increasingly doubt their own perceptions. Women with complex, often invisible illnesses experience this phenomenon particularly often—not least because of deeply rooted gender bias in the healthcare system. This bias means that women’s pain is minimized, symptoms are psychologized, and diagnoses are delayed or never made. Since the COVID pandemic, the term “medical gaslighting” has received more attention—and for many, it has long been a bitter reality.
What happens when women with EDS aren’t believed was recently shown by a tragic example from New Zealand. Three women with EDS died because they were denied urgently needed medical care. Despite their EDS diagnoses, their symptoms were played down and not taken seriously. The fatal outcome: they died from complications of the disease. Similar cases also exist in Germany—only nobody talks about them. Parents of sick children—regardless of whether it’s EDS or ME/CFS—are, especially before a correct diagnosis, in the worst case even accused of child abuse.
“When Samira could no longer eat or drink and all therapeutic options had been exhausted, we told the hospital about literature that recommends placing a PEG tube [a surgically placed feeding tube that goes directly through the abdominal wall into the stomach] in such cases. After that, we were reported for endangering our child’s welfare,” Josefine recalls. As a result, Samira received no adequate therapy for months.
Most recently, the film “Complicated” ]and the Netflix documentary “Take Care of Maya” exposed the structural problems behind such false accusations in the U.S. These problems are transferable to many other countries with similar medical systems and cultures.
After two and a half years, Samira finally received the ME/CFS diagnosis. By then, she could no longer leave her bed or tolerate loud sounds. On good days, she may communicate with her family for 10–15 minutes. The rest of her time she spends in a darkened room without sensory stimuli. With the diagnosis, Samira has overcome the biggest obstacle—but that doesn’t mean things become easy afterward.
“This station is currently not being served.”
Have you ever tried traveling first class on the train in a wheelchair in Germany? Trick question: there are no first-class seats for wheelchair users. The healthcare system is similar. People constantly claim there is no two-tier medicine—just as the rail system pretends the service for wheelchair users is almost like first class—yet most disabled people are treated like second-class patients when they seek medical care. Besides the physical inaccessibility of many medical practices, people like me face other barriers too. For example, there is not a single dedicated EDS center anywhere in Germany. There also aren’t specialists for all EDS complications, even though one study suggests patients need support from at least 12 specialties. That means: anyone who even has the strength—and the money—to keep pushing on their own often has to seek treatment abroad. Because elsewhere, there are sometimes professionals who don’t immediately run away screaming when they hear “multisystemic.” In Germany, the few experts who existed have long since withdrawn from statutory health insurance care. No wonder: treating complex, chronically ill patients is a losing business in the current system—financially, in time, and emotionally. To the system, we are like a regional train with a 50-minute delay, no air conditioning, and a broken toilet: nobody wants to run it because it doesn’t pay—and in the end, we get removed from the timetable.
But better dead?
When I talk about how people with EDS, ME/CFS, Long COVID, and many other ignored illnesses around the world are dying quietly, I’m often stared at in disbelief. For these communities, it’s the bitter reality. In Canada, there have recently been more cases in which people with EDS and treatable complications—treatment that would be available in another country—were instead offered euthanasia. These are young people who, with proper treatment, could live another 30–40 years. This also happens to people with other disabilities, for example in the Netherlands, where several autistic people have died—just to counter the single incident narrative right away. “That wouldn’t happen in Germany,” people usually tell me; we’re far too good at everything. But that isn’t true. In Germany, too, there are now people whose quality-of-life limitations are so severe and whose support is so minimal that death becomes the better option. The rail company at least offers a refund for total cancellation. The system here? It offers you assisted dying when care would be too expensive or too complicated.
“We apologize for the inconvenience during your journey.”
Because of inadequate healthcare, many people with chronic illnesses live at the edge of existence. Being chronically ill is expensive. At the same time, many people like me have an extremely poor quality of life because we receive no medical support—and therefore no symptom management. Many cannot work and depend on social security. In theory, Germany’s system sounds solid: if you are ill long-term, you eventually receive disability benefits. In practice, this transition feels more like a train that is announced but never arrives—or at best stops at the wrong platform.
Around 40 percent of first-time applications for disability beneftis – in Germany these are called retirement based on health reasons – are rejected. This happens particularly often with rare or invisible illnesses like Ehlers-Danlos syndrome or ME/CFS. Even if you have significant functional limitations in everyday life, assessors often say these are not sufficient.
And it is not uncommon for the examiners themselves to make the problem worse: lack of knowledge about complex conditions, decisions based solely on files, or flawed evaluations by non-specialized doctors mean many people have to change platforms repeatedly—from application to objection, then to court. This transfer costs energy, time, and often money—exactly the resources that people with fatigue- and pain-dominated illnesses do not have.
The system is designed for delay. Paying disability benefits over many years is expensive for the insurer. So the hurdle stays high, especially for young, chronically ill people. Those who can no longer fight remain on the wrong platform—while the train of security passes them by on another track. But there is no second train. The consequence: homelessness or complete dependence on family or partners—if you have anyone at all. Some end up in institutions, others in bed, needing care 24/7 but without support. And some simply disappear. From statistics. From waiting rooms. From life.
Terminal stop
In Germany, people like to claim that nobody is left behind. In reality, people with complex chronic illnesses are not only left behind—they are actively held back. Whether Ehlers-Danlos syndrome, ME/CFS, Long COVID, or other multisystemic conditions: care is patchy, recognition is low, support is a gamble—and heavily dependent on privilege.
We don’t need special treatment or golden tracks—we need a system that doesn’t offload responsibility the moment it doesn’t know something, but looks closer precisely when there is uncertainty. We need structures that do more than cosmetic inclusion and extending our time in waiting rooms. And above all, we need one thing: a view of humanity that doesn’t file us away as “too complicated” and “not worth it,” but finally takes diversity seriously in medicine as well.
Until then, only one thing remains: giving each other a push-start. Because if the train won’t run, then we’ll push it together—even if it’s always uphill. “I just want everyone to know and recognize this illness so we can prevent children from getting worse. With Samira, a lot of this could have been prevented. That’s the only reason I speak about ME/CFS,” Josefine concludes.This article authored by Karina Sturm was first published by Die Neue Norm.
