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Katharina 🍀 @katha1970@medibubble.org

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Nov 20 • 40 tweets • 22 min read

Dear Medical Doctors, if you want to help patients with complex chronic diseases (and they sincerely need your support!), here are some important wishes from a patient’s perspective.
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1. Believe the patients
Believe them their perception, their symptoms, their adverse reactions to treatments, their degree of suffering. They are the experts for their own symptoms. They know their bodies and reactions better than anyone else.
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Do not deny them their perception, even if some of their descriptions may seem atypical to you. Always believe patients more than medical reports
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2. Take the patients and their stories seriously
Do not assume that patients exaggerate or that they cannot judge something as laypersons. Try to be free from any bias. Take atypical descriptions just as seriously.
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Many patients also do have a lot of secondary symptoms that have been ignored and labeled irrelevant for years, but may eventually provide important additional information.
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3. Listen well
Difficult to do in today’s medical structures, but do your best to let patients adequately and sufficiently describe their symptoms and concerns. Without sufficient background knowledge, it will be much more difficult to help chronically ill patients.
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4. Beware of psychologizing patients' symptoms
Many chronically ill are literally “traumatized” by doctors all too quickly labelling their symptoms as psychological if the complexity is beyond their competence.
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Many patients are actually open for psychological SUPPORT to better cope with their suffering or for treating comorbid psychiatric disorders if present.
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Unfortunately, the psychologization of somatic symptoms all too often leads to a complete stop of doctors continuing to look for potential somatic causes that could actually be treated to reduce the patient’s suffering.
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Leave psychological/psychosomatic assessments to those who are experts in that field. If it is not your primary discipline, you cannot win anything, but may lose a great deal with any psychologization of chronically ill patients.
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5. Be open-minded
The level of knowledge in medicine is always evolving. Just because no biomarkers have yet been found for certain complex diseases it does not mean that they cannot have underlying somatic mechanisms. Science was also once convinced that the earth was flat.
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6. Show empathy
The stories and degree of suffering of chronically ill are often heartbreaking. Despite keeping a professional distance, it's possible & very valuable to pat. if doctors understand the extent of their suffering and show empathy for what they are going through.
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7. “First, do no harm”
“Harm” from a patient’s view with complex symptoms means: NO hastily started medication without fully understanding the complexity of the patient’s symptoms.
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Proceed very cautiously if patients often react strongly to meds and truly provide support if they do show reactions. NO treatments that may potentially cause harm (e.g. no exercise if suffering from post-exertional malaise).
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NO psychologizations in medical reports as they may severely compromise the patient’s further chance to get help.
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8. Be honest and communicate your limits if it exceeds your competence
It doesn’t matter if you don’t have a solution. No chronically ill patient who has been searching for help for years will expect that of you. Honesty by doctors about their limitations...
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...in finding a solution will often be taken very positively. In contrast, patients will strongly disapprove of “quick solutions” or “trial & error” without knowing the whole story and ignoring patients' often legitimate concerns based on previous experience.
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9. Don’t be intimidated by patients’ knowledge
Chronically ill patients often have seen numerous doctors over many years without having found substantial help or symptom improvement. Inevitably, they have engaged in research on possible causes and treatments.
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In some under researched diseases patients know much more than most MDs. Do not blame them for it. With no medical help+highly debilitating symptoms, they have no choice but to inform themselves as best as possible in order to try to find some relief of their great suffering.
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10. Educate patients
Of course, despite own research there may be misconceptions. Help patients better understand medically explainable mechanisms of their symptoms. Explain chances, risks, and potential adverse effects of treatments that they are proposing themselves.
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11. Show and have real interest
With each new doctor, patients have very high hopes that finally he/she will help them reduce their suffering. Ask questions, be interested, inform yourself, think “outside the box”. If possible, refer him/her to colleagues maybe able to help.
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12. Truly try to reduce the patients’ suffering
Look at how some sort of symptom reduction may be possible even if you don’t know the overall diagnosis yet. Treat what is possible to treat.
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For patients with severely impaired quality of life little steps forward and little improvements can already mean a great deal. If necessary, proceed in atypical ways, e.g., tiny dosage of meds to start.
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If patients are open for it and it seems useful, propose some sort of psychological SUPPORT. But do assure that it is only SUPPORTIVE and does not impair the further treatment of physical symptoms or the search for somatic symptoms in any way.
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13. Be a reliable partner for your patients
Many chronically ill would already be glad to have some improvement of symptoms or to simply have a doctor who sees their suffering and truly wants to help them.
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If no curable diagnosis is in sight, try to be a reliable partner for your patients who will be there for them throughout the process.
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14. Treat patients as equals
Don’t be condescending – neither verbally nor non-verbally. Be aware of the fact that, based on manifold negative experiences with doctors, many chronically ill are highly skeptical as soon as someone will once again not take them seriously,...
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...not believe them or is quick to suggest some treatment without knowing the complexity of their symptoms. Many will not go to doctors any more even with extreme symptoms as they have been disappointed so often or were refused help despite highly debilitating symptoms.
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15. Be kind, sympathetic and respectful
These patients often suffer from very debilitating symptoms as well as a strongly impaired quality of life. Despite that, many have experienced “medical gaslighting” and “medical neglect” for many years.
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They often experience that doctors see them as too complicated, too unusual, requiring too much effort – and that, repeatedly, they did not get any help. Be kind, respectful and supportive to them. They sincerely deserve this.
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It will do them good and set the groundwork for a trusting patient-doctor relationship which may facilitate finding improvements.
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16. Ask yourself what you would do it you or someone close to you suffered like this
Would you think differently about the symptoms and their possible causes? Act differently? Do more research? What would you do? Try to apply this as best as you can to help your patients.
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Overview of the above patient wishes:

Thanks for reading and your contribution to help patients with complex chronic symptoms in a substantial & empathetic way and to no longer let them suffer alone with no proper medical help. They urgently need good, caring, supportive doctors. Please be one of them.

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