I recently asked in one of the Ehlers-Danlos syndrome online groups what other EDS patients had to tell about their worst experiences with doctors. The replies I got were shocking and I decided to write a German article about it:
The experiences of EDS patients can be easily transferred to other invisible conditions. In fact, probably almost all people with a huge variety of “non-specific” symptoms know about these problems.
Alarmingly many of us are familiar with comments like:
„Those symptoms are not physical ones, go and see a psychologist,“
„It is all in your head!“
Frequently statements like those lead to misdiagnoses in the next step, and in a huge amount of the cases with misdiagnoses it is a false psychological diagnosis.
How do false diagnoses develop?
The „chronic whiplash“ injury is still classified as a psychological problem by some doctors, because the often missed instability after such an accident goes undetected. In fact, it was proven many times that chronic whiplash injuries are based on real physical damage.
The effort that would be necessary to clarify all those unspecific symptoms is far more than our health system can offer – time- and moneywise.
The symptoms do fall into several disciplines and all specialists only see their area. The personal experiences and knowledge of the patient over their body is not taken into account.
Diagnostic measures, such as the Upright MRI or CT scan in rotational views, are not covered by German health insurances and therefore little recognized in Germany. Doctors do not recommend them and they are not available for patients that cannot afford them due to financial problems.
If the patient is confronted with a false mental diagnosis and responds in a defensive manner this is immediately interpreted as an indication for the presence of mental illness.
Very few doctors know how to evaluate Upright MRIs especially in the absence of bony injuries.
There are no standardized diagnostic criteria for cervical spine instabilities.
A study accomplished by Eurodis (1) showed that half of all EDS patients had to wait 14 years for their diagnosis and had to be seen by more than five physicians. Also, a recent study with over 2000 participants showed the unbelievable result that 97 percent of all EDS patients were misdiagnosed in the beginning, most of them with a false psychological disorder (2). Studies on cervical spine instability patients are likely to be similar or even higher.
Doctors are taught that symptoms that do not have a simple physical explanation have to be of a psychological nature. And these in turn cannot be shown objectively and therefore cannot be disproven. Symptoms that do not have an immediate medical explanation are equated with psychosomatic causes (3)! Moreover, a reason or cause does not have to be stated to support the diagnosis.
Several studies have shown that misdiagnoses do also occur with conditions that are relatively easy to diagnose such as pulmonary embolism (4). Misdiagnoses were in almost 70 percent associated with severe or moderate consequences (5)! At the moment it is believed that wrong diagnoses occur in 10-20 percent (6), which is already frightening high, but also numbers above 20 percent have been reported (7).
Quite contrary to the statement of some doctors that all chronically ill people are often „overdiagnosed“, a study stated that medically unexplained symptoms tend to be underdiagnosed (8).
What consequences do misdiagnoses have for the patient?
Patients that get many wrong diagnoses tend to see many doctors. Behavior like this is called „doctor hopping“ and again used as a criteria for mental illness, which leads the patient to seek help at even more physicians and so on…
If this misdiagnosis is communicated from one physician to another, the patient might lose the support of his other doctors. Moreover, hardly any other test will be recommended since the false psychological diagnosis can be used as explanation for every symptom that occurs.
Through the communication of the misdiagnosis between doctors, and even between doctor and insurance company, some requested coverage for tests could be denied. And an endless spiral develops that can make the patient feel completely desperate.
The patient might lose his or her support system – family or even financial support – because his or her symptoms can constantly be belittled and not believed in.
And then, it could come to the actual development of a mental illness as a result of the stress caused by ignorance, disrespect and failure to help (trauma, PTSD). Patients could become afraid of doctors. An anger towards all doctors occurs, which in turn hurts those doctors who really do care and who are concerned for the well-being of the patient.
False diagnoses lead to wrong treatments and hence to irreversible damage – in case of cervical spine instability, it may even cause spinal cord damage. Some patients are being encouraged to seek help in a hospital if they develop severe neurological issues, but if they do so, they are going to be sent back home immediately, due to a lack of knowledge.
The result: A basic fear of a psychological diagnosis. If the patient later actually develops the latter, he or she might not seek help or treatment for it.
According to Eurordis, a misdiagnosis prolongs the time to the correct diagnosis. In case of a false mental illness diagnosis (for example in Ehlers-Danlos syndrome patients) the time until the correct diseases is found goes up to 22 years (1)!
A study in 2010 shows that patients that are mistreated like this are losing confidence in the entire health system and all doctors. They tend to prefer risking their health instead of seeing another doctor and being exposed to further ignorance and disrespect (9).
And what can I do to avoid misdiagnoses?
I definitely can say that my way to diagnoses was very difficult, but not all doctors are as described above. In my case, primarily neurologists were the ones I had my problems with, even after the Ehlers-Danlos syndrome diagnosis I sometimes was not taken seriously by some of them.
I tried to create some helpful tips that hopefully lead you to a quicker diagnosis:
In my opinion, the best way to diagnosis includes: doing a lot of own research, the will to never give up, the fact that I don’t know any limits when it comes to finding out the cause of my suffering, and the decision to finally leave Germany behind and seek help in the US.
Of course this does not mean everyone should just leave their country and get expensive tests performed in the USA. What I want to say is that everyone has to be willing to move beyond boundaries and to stand up for themselves.
There is always a way if you are willing to fight, and don’t stop until you reach your goal!
US organization that fights for the rights of patients:
Presentation Diane O’Leary:
(1) Eurordis Care Study
Sections of this chapter were written with the collaboration of the Association Française des Syndromes d’Ehlers Danlos and Associazione Italiana per la Sindrome di Ehlers-Danlos (A.I.S.E.D.).
(2) EDS survey results Webinar 2016, http://www.chronicpainpartners.com
(3) Creed, Francis, et al. “Is there a better term than “medically unexplained symptoms”?.” Journal of psychosomatic research 68.1 (2010): 5-8.
(4) Kirch W, Engwicht A. Definition und Häufigkeit der Fehldiagnose. InFehldiagnosen und Patientensicherheit 2005 (pp. 1-52). Springer Berlin Heidelberg.
(5) Schiff GD, Hasan O, Kim S, Abrams R, Cosby K, Lambert BL, Elstein AS, Hasler S, Kabongo ML, Krosnjar N, Odwazny R. Diagnostic error in medicine: analysis of 583 physician-reported errors. Archives of internal medicine. 2009 Nov 9;169(20):1881-7.
(6) Sandra G. Boodman. Misdiagnosis is more common than drug errors or wrong-site surgery. Washington Post, 2013.
(7) Singh H, Giardina TD, Meyer AN, Forjuoh SN, Reis MD, Thomas EJ. Types and origins of diagnostic errors in primary care settings. JAMA internal medicine. 2013 Mar 25;173(6):418-25.
(8) Nimnuan C, Hotopf M, Wessely S. Medically unexplained symptoms: how often and why are they missed?. QJM. 2000 Jan 1;93(1):21-8.
(9) Berglund B, Anne-Cathrine M, Randers I. Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers–Danlos syndrome. Disability and rehabilitation. 2010 Jan 1;32(1):1-7.