When you hear hoofbeats think of horses, not zebras

This is a phrase that is taught to most medical professionals as students. From the beginning of their training, they are taught when you hear hoofbeats, you should assume that they are horses, not zebras. This aphorism is used as a method to teach medical students to think of the most common illness, which in turn is the most likely cause. It is similar to the principle of Occam’s razor where the most likely outcome is usually correct.

Nevertheless, after all the common illnesses have been ruled out, it is important to continue to search for these so-called zebras. Zebras in this case would be a rare illness. Ruling out the common illnesses is important, but it is also essential to remember that rare illnesses do exist. If you stop searching for the answer after you have ruled out the common illnesses and instead blame  symptoms on anxiety, stress, a person’s weight or any other factor, you are sweeping the problem under the rug and leaving the person feeling ignored, upset and brushed aside.

The chronic illness community have assumed the identity of zebras for themselves as they are the medical anomalies. The people who don’t have the typical conditions. The people who end up fighting for a diagnosis against a system that is created for horses. The dismissal of a person with rare conditions can lead to a mistrust of all medical professionals which can be difficult when the conditions require a lot of support either through medicine or interventions.

Teaching medical professionals not to dismiss cases that are not common, as growing pains, as anxiety, as hypochondria, will help both improve the relationship and communication between the chronic illness community and the medical community.

Arthur Conan Doyle writes as Sherlock Holmes “Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.” This is the same with chronic illnesses. Once you have ruled out all the common illnesses, whatever remains, however rare or unlikely, must be the truth. Dismissal doesn’t just affect the relationship between that patient and the one doctor, it causes an effect for that patient with all future doctors. Dismissing those with rare illnesses leads to a fear and distrust of the medical community and a barrier between the patients and the medical staff, which needs to be overcome by the next healthcare professional that the person sees.

As a person with multiple rare chronic illnesses, I have experienced my fair share of doctors that dismissed my symptoms as growing pains, weight or anxiety because I did not fit any common illness that were easily fixed so I was dismissed and told to lose weight or focus on being less stressed. I was told there was nothing wrong with me and discharged from multiple doctors. When I was crying because of pain, I was given paracetamol and told that it wasn’t working because I hadn’t built it up enough by taking it every 4 hours.

Incidences like these meant that I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) type 3, Postural Orthostatic Tachycardia Syndrome (POTS), fibromyalgia and myriad other illnesses until I was 16. EDS is hereditary and incurable, but treatable with medication, physiotherapy and further medical support. Instead of help as a child, I was treated to dismissal due to my age or weight. I have found during my journey to diagnosis and through other’s stories that if the condition was not easily diagnosed or curable, then a person was more likely to receive no help or further investigation and instead dismissed with generalised statements to live healthier, regardless of age, weight or lifestyle.

Eventually I found a doctor that listened to me. He listened to me when I described the severity of my symptoms and the impact upon my life. I was able to build a professional relationship with him that allowed me to overcome my distrust of doctors and I now have formed a partnership with him to treat my conditions and we discuss all options and make decisions together with regards to my conditions. This relationship has been hugely beneficial in improving my health and lifestyle as well as allowing me to become more confident when dealing with other healthcare professionals.

If we can work on the rapport and therapeutic relationship between chronically ill patients and doctors, how to handle patients who do not fit the common illnesses, we could improve the relationships and speed and effectiveness of diagnosis, treatment and interventions for future patients. To ensure they don’t experience dismissal that may cause them to become fearful or anxious of the healthcare system.

Rapport is such an important tool for medical professionals as most see hundreds of patients per year, but for patients this is the first time they’ve seen them and they are searching for an answer. People with uncommon illnesses can fear being dismissed or not listened to by doctors who presume they have nothing wrong with them or even that the diagnosis they have is rubbish or the new ‘fashionable diagnosis’.

Most people with rare illnesses have experienced disbelief from doctors who have dismissed them instead of listening. This leads to anxiety and fear of this recurring. Doctors need to be aware of this when dealing with complex patients, who will require repeated treatment. The disbelief I have experienced from doctors has led me to feel like I am a hypochondriac whenever I experience a series of symptoms related to my illness. The fact that I often do not believe myself and believe that I should be doing more despite extreme pain and fatigue is due to the past treatment by medical professionals, that could have been avoided with compassion and a willingness to build rapport.

Therapeutic influences and building rapport should be used in all appointments but as people with chronic illnesses have usually been ignored for years before being diagnosed, building a relationship to gain their trust is essential as they are likely to be under certain healthcare professionals for years or even for life.

Having knowledge that patients with complex conditions are used to being dismissed allows the doctors to start off on the right foot with their patients and hopefully not dismiss those they cannot diagnose.  Being able to communicate that they haven’t found a diagnosis and either referring on or searching for more rare conditions that may fit will help improve confidence in doctors and lead to more people with chronic conditions trusting the medical and healthcare communities with their diagnoses and treatments. If the doctor does believe that the person is affected by factors such as weight, stress or other factors being able to approach these topics with compassion can make a difference in a person’s future relationships with healthcare professionals.

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